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FH Europe Foundation

FH Europe Foundation

FH Europe Foundation (FHEF) represents the needs of people with familial hyperlipidaemias. Covering both the most common genetic and inherited conditions in the world, and the rare conditions. The Foundation acts in the area of advocacy and patient support, drives public health policy improvements and collaborates progressively with leading European and the EU institutions. Our mission is to improve Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions, (specifically FH, HoFH, elevated Lp(a), and FCS), so that all those impacted receive optimal treatment and support, resulting in longer and healthier lives.

International Heart Spasms Alliance

IHSA is a global initiative lead by experts through experience. These are patients who live with coronary vasospasms and/ or microvascular angina, while also working in a collaborative equal partnership with clinicians.

Our website provides accessible, reliable, accurate, and contemporary information. With the latest research and personal experience, we aim to provide a holistic approach, which will give a broad support for patients to live their best life with this often debilitating and life changing chronic health condition.

Our objective is to reduce the time for patients to receive an accessible and reliable diagnosis, while also promoting patient-centred, and evidence based, treatments. This includes local, national and international management protocols and treatment strategies. Through an equal partnership with clinicians, we will support research into the causes of coronary vasospasms and microvascular angina. We will continue to support health professionals providing all aspects of Cardiology care, so they may apply their knowledge with compassionate expertise to patients.

Our vision is a world where Coronary Spasms and microvascular angina are quickly, and appropriately, recognized, treated, and respected with the patient at the heart of care. In this way, we strive for overall support to live with vasospasms, microvascular angina, and other hard to diagnose heart conditions.

Mended Hearts Europe

Mended Hearts Europe

Mended Hearts Europe is dedicated to inspiring hope and improving the lives of heart patients and their families in Europe, Africa and the Middle East through ongoing peer-to-peer support, patient education, and advocacy.
Our mission is grounded in three key principles:

  • Support: We create an inclusive and compassionate community, ensuring that heart patients and their families never feel alone.
  • Education: We provide relevant resources and knowledge, empowering heart patients and their families to make informed decisions about their healthcare.
  • Advocacy: We engage heart patients and their families in advocacy efforts, enabling them to make decisions that enhance their quality of life.


Asociación Civil Pacientes de Corazón Argentina

Asociación Civil Pacientes de Corazón Argentina

The Asociación Civil Pacientes de Corazón Argentina aims to improve the quality of life of cardiac patients through training and education, and looks to encourage lifestyle changes that can benefit patients and their families. The Association offers support to the patient community, and endeavours to partner with experts to deliver advice on matters of diet, exercise, mental health, and stress, among others.


Meine Herzklappe

Around 115,000 people over the age of 65 in Austria are affected by heart valve disease. However, most diseases remain undetected, as symptoms of lack of awareness are often accepted as a normal part of aging, although they can be life-threatening. In many cases, heart valve disease is therefore not recognized and treated, although a number of treatment methods can be used for affected patients.

That is why in 2019 we launched the association “Meine Herzklappe – Verein zur Informations über Herzklappen diseases”.

Our goal is to raise awareness of heart valve diseases in Austria and thus to promote early detection and successful treatment in the long term. We would like to inform, support those affected, bring people together, impart knowledge about the disease and thus help to avoid unnecessary valve death.



Supported by Australian and New Zealand cardiologists, hearts4heart is a health promotion charity and peak body that supports, educates and advocates for people living with heart disease.

hearts4heart brings together patients and healthcare professionals with the shared goal to reduce the burden to heart patients.

hearts4heart provides targeted educational programs, resources and services to improve the diagnosis, treatment and quality of life for people affected by heart disease. We achieve this through support, information, education, awareness/screening events and advocacy.

The primary goal of the organisation is to eliminate stroke and preventable deaths.

Her Heart

Her Heart

Her Heart is Australia’s only not-for-profit focused on the prevention of women’s heart disease. We know that globally we lose 1 in 3 women to Cardiovascular Disease and in Australia that is 1 woman every hour, to something that is 80% preventable. Her Heart educates and empowers women to make the necessary changes to decrease their risk of developing heart disease. Our Mission is to:

  • Educate: Be the ‘go-to’ place for women to access accurate (evidence-based) information
  • Advocate: To make women’s heart health a top priority in the health, government, business and community sectors
  • Impact: To improve the heart health of women with long-lasting impact

Her Heart delivers prevention and awareness programs using evidence-based research findings. Our projects, programs and campaigns underpin the four key pillars of PREVENTION: Awareness; Education; Research and Advocacy.

Heart Support Australia-logo

Heart Support Australia

Heart Support Australia is the peak national body supporting Australians affected by heart disease through peer support. We are a national consumer organisation providing support, encouragement, and education to heart disease patients and their families.

Established in 1989, our mission is to facilitate the transition from hospital to home and provide ongoing support for heart disease patients in Australia, with particular attention to regional Australia. Our goal is to stop secondary cardiac events and improve the lives of those living with heart disease in Australia.

Our peer support programs have helped thousands of Australians achieve improved physical and psychosocial health outcomes over the years. Our groups provide a safe space to receive education, discuss concerns, and increase social connectedness leading to improved physical and psychosocial health. Our Hospital Patient Visitor Volunteers attend cardiac wards around the country providing individual peer support to patients in need after a newly diagnosed heart condition or surgery.


Cardiomyopathy Association of Australia

Cardiomyopathy Australia is a registered, voluntary, charitable organisation supporting people with all forms of cardiomyopathy, and their families.


Instituto Lado A Lado Pela Vida

For 10 years, the Side by Side Institute has been dedicated to bringing information about health and awareness of the importance of changing habits to adopt a healthier lifestyle, focused on prevention. We do this through our Campaigns and Pillars, acting throughout Brazil.


Ligue Cardiologique Belge

Our priority mission: to make prevention information free and accessible to all.


HCM Patient Foundation

The mission of the HCM Patient Foundation is to unite and support in any possible the patients of the genetic heart disease Hypertrophic Cardiomyopathy (abbreviated as HCM), located in the European Union, and their relatives by:

  • Working together with the competent local and European authorities to improve the healthcare of HCM patients and protect their interests;
  • Assisting these authorities in the adoption of legislation to improve the standard of living of these patients;
  • Supporting research into new ways of diagnosing and treating the disease;
  • Helping to raise public awareness of HCM and its associated comorbidities and consequences for the well-being of patients and their close people by the production of information materials, events, etc.;
  • Working with public and private companies to create innovative solutions related to the early detection, diagnosis, prevention and treatment of HCM, as well as the prevention of sudden cardiac arrest.

Our vision is to achieve a much better outcome of HCM in patients in the European Union, including: prolonged life expectancy; better quality of life; improved understanding of genetic factors; access to the most modern medicines and treatments, including psychological care.


Heartlife Foundation Canada

The Heartlife Foundation

The HeartLife Foundation is Canada’s first – and only – national patient-led heart failure organization. We are a Federal Not-for-Profit aimed at raising public awareness of heart failure, engaging patients, families and caregivers to provide education and mentorship, help facilitate access to the latest innovations and therapies, and advocate better care for all. Charitable status is currently under review

Heart Valve Voice Canada

Heart Valve Voice Canada is a non-profit patient advocacy organization that works to improve the health and quality of life of people living with heart valve disease. We advocate for increased and early diagnosis, timely access to appropriate treatment, removal of barriers to receiving that diagnosis and treatment, and ensuring meaningful support systems for those affected by heart valve disease. Our advocacy network includes patients and their support systems, a multi-disciplinary group of health care professionals, and other cardiac and patient advocacy and service organizations.

Canadian Heart Patient Alliance

We are a patient-led nonprofit umbrella organization of patients, families, health professionals and supporters with a collective vision of eliminating cardiovascular disease. We will do this by taking action against the causes of cardiovascular disease, genetic, environmental, and lifestyle. We are taking focus on high cholesterol and other lipids, due to genetic and non-genetic factors, as the leading under-diagnosed and under-treated cause of cardiovascular disease and early death. The Canadian Heart Patient Alliance is working toward the day when no Canadian will suffer reduced quality of life, life-altering event, or early death due to high cholesterol and other lipids.

Learn more here:

Canadian Heart Patient Alliance

The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation

Established in 1995, The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation (aka The Canadian SADS Foundation), a registered Canadian charity, is the only patient advocacy group in Canada dedicated to supporting patients and families affected by inherited cardiac rhythm disorders. Frequently referred to as SADS conditions, inherited cardiac rhythm disorders are a group of diseases that affect the heart and can sometimes cause sudden cardiac death (SCD). A correct and early diagnosis and appropriate treatment for an inherited cardiac rhythm disorder will often result in affected people being able to lead productive lives with normal life spans.

Learn more here:


Nicosia Heart Patients’ Association

Heart Patients’ Association has been established in 1983, aiming to support heart patients’ rights for better health services. It’s a Non-Governmental Organization which registers as members heart patients whose permanent residence is the district and city of Nicosia.

It is a patient-led organization, managed by an eleven-member board. Beside supporting its’ members rights for better health services, the Association offers services aiming for a better quality of life for heart patients. Such services include a rehabilitation center and social/psychological support to its ‘members. The Rehabilitation Center collaborates with a cardiologist and a physiotherapist to offer a safe environment and professional guided exercise programs to our members. The Social worker of the Association offers support and information to Heart Patients of the General Hospital. The Association collaborates with health professionals for organizing speeches for the general public aiming for the prevention of cardiovascular diseases. It is very important to us to intrigue more people that face cardiovascular diseases to actively engage with the Association thus empowering heart patients’ even more.


The Egyptian Association for Care of Heart Failure Patients

The Egyptian Association for Care of Heart Failure Patients

Our aim is to heighten awareness of Heart Failure through a national disease awareness campaign. We aim to improve the lives of people living with heart failure. We will define and clarify the severity of the problem and make it understandable to all audiences. We will strive to amplify the patient voice by communicating with the media, press and policy makers.


Alliance du Coeur

AVEC (Association Vie Et Coeur)

A non-profit organization created by people with heart failure who aim to:

  • Offer non-medical support to newly diagnosed people and their families
  • Develop friendship and mutual help between members
  • Organize and offer the members adapted physical activities
  • Ensure exchanges of medical, paramedical and public information in consultation with the scientific council
  • Keep members informed about heart failure and related diseases
  • Ensure the representation of heart failure patients and defend their interests in various local, regional, national and international bodies
  • Promote information and research on heart failure and related diseases
  • Promote the prevention of heart failure


Association pour les Patients Insuffisants Cardiaques

ASPIC’s mission is:

  • to work for the prevention of cardiovascular diseases
  • to morally support patients and their loved ones by listening and connecting with other people with heart failure
  • to make known the disease, its consequences and constraints for a better understanding of those who suffer and better care
  • support patients and their relatives in the observance of the food, medication and lifestyle guidelines imposed by the disease
  • to inform the public of the symptoms of the disease for an earlier diagnosis
  • to create a constant rapport with doctors and nursing staff for better management of the disease
  • to defend and if possible to change the rights and the help to the patients

Association pour le soutien à l’Insuffisance Cardiaque

Consisting of patients and representatives of hospital services, the SIC association aims, among other things, to help, support and support patients in their fight against heart failure by assisting or accompanying newcomers to the disease, by contributing to a better knowledge of this pathology and a better and wider consideration of its effects by the public authorities through health policy.


ANHET.f aims to :

– To inform the public, the medical profession and the health and social authorities, in order to improve the state of scientific and medical knowledge;

– To facilitate diagnosis and to make known and recognize familial hypercholesterolemia and lipoprotein (a);

– To provide informative, technical and moral support to families faced with familial hypercholesterolemia and lipoprotein (a);

– To contribute to the medical research effort and to the improvement of care practices related to familial hypercholesterolemia and lipoprotein (a).

ANHET.f a pour but :

– D’informer le public, le corps médical et les autorités sanitaires et sociales, de façon notamment à améliorer l’état des connaissances scientifiques et médicales ;

– De faciliter de diagnostic et de faire connaître et reconnaître l’hypercholestérolémie familiale et la lipoprotéine (a) ;

– D’apporter une aide informative, technique et morale aux familles confrontées à une hypercholestérolémie familiale et une lipoprotéine (a) ;

– De contribuer à l’effort de recherche médicale et à l’amélioration des pratiques de soins relatifs à l’hypercholestérolémie familiale et la lipoprotéine (a).


Initiative Herzklappe

Heart valve disease is common among people over 65 years of age. Because the symptoms of this disorder can be non-specific, many sufferers are never diagnosed. However, around 50 percent of patients with serious heart valve disease such as aortic stenosis die within two years if the disease is left untreated. In Germany, only 0.9 percent of those over the age of 65 know what is aortic stenosis, the most common heart valve disease.

We therefore see an immediate need for action to create greater awareness of heart valve diseases and especially their diagnosis in the population. To achieve this, we, as doctors and patients, have joined together to form the Heart Valve Initiative. We especially want to reach older people, their relatives and also doctors in order to improve the early detection of heart valve diseases.


ARVC-Selbsthilfe e.V. is a patient organisation for patients and their families with the inherited heart disease ARVC / ACM in all German-speaking countries such as Germany, Austria and Switzerland. We provide information, counselling, meetups, online meetings, lectures and Q&A sessions with experts. Furthermore, we are building a network of clinicians and researchers via our scientific board and by our contact to other patient organisations (ACHSE, BVHK, Herz-ohne-Stress, SADS), helping to recruit patients for studies, and providing state-of-the-art information by studying scientific literature and visiting congresses. We aim for preventing sudden cardiac death and want to establish autopsy and genetic testing after SCD < 40 yrs being and its coverage by health insurance companies. Another project is a better psychosocial support of the patients and the integration of patient reported outcome measures (PROMs) into clinical patient pathways. It is our wish to develop a specific rehab program for ACM patients. More patient involvement in studies, at congresses and for guideline-making is needed.

Herzschwaeche Deutschland

Herzschwaeche Deutschland has set itself the goal:

  • To provide information about the importance of cardiac insufficiency for health and life through publications and events
  • To promote and initialize programs for the early detection of heart failure
  • Support patients suffering from heart failure and their relatives

Selbsthilfegruppe “Herzlich Willkommen”

The self-care group “Heartily Welcome” is a completely private and independent non-profit organisation founded in January 2024 that brings together people of any age affected in any way and by any kind of heart disease (so that includes caring family members) to exchange of experience, identify ways of help and get in touch to each other. The group meets once a month. It is completely voluntary and free of charge. At our meetings we focus on a main topic, e.g. artrial fibrillation or high blood pressure and the like, share and discuss our own personal experience with it, and learn from each other. If needed we invite experts like cardiologists to explain a heart disease from a medical perspective. In addition we learn about healthy behavior, healthy food and cooking, do physical activities and excursions to local clinics or recreation facilities. The motto is learning from affected people for affected people for the benefit of affected people. To join the group no formal membership is required.

Selbsthilfegruppe LipidHilfe-Lp(a)

Selbsthilfegruppe LipidHilfe-Lp(a) was formed in 2019 by a group of Lp(a)-affected people dedicated to raising awareness around the problem of increased Lp(a)-levels and delivering support and resources to patients and their relatives. They host lectures and discussions on disease-specific symptoms and treatment by experts, share online training courses on their YouTube channel, and distribute informative flyers through medical practices, dialysis centers, and their clients.

The organisation aims for exchange of information. Lp(a)-affected people and their relatives have the opportunity to get in contact with those affected and to share their knowledge of the disease and its symptoms, to exchange practical experiences and findings, and to initiate contacts to current medical studies.



Stroke Association Support Network-Ghana (SASNET GHANA) is a national organization with a mission to work with government, the Ghana Health Service and other stakeholders working in the NCD space to reduce the burden of CVD, stroke, hypertension and NCD in Ghana. SASNET Ghana’s primary purposes includes advocacy, raising awareness, and health education/promotion, aimed at reducing the prevalence and incidence of stroke and CVD.


Greek Carers Network EPIONI

Greek Carers Network EPIONI was established in 2017 and is a national nonprofit organization supporting informal carers.


  1. Organizes info events on various health issues of interest to carers.
  2. Develops learning platforms for patients and caregivers.
  3. Conducts awareness campaigns to highlight the contribution of informal carers to the national health and welfare system.
  4. Lobbies local authorities in Greece to institute care-friendly policies.
  5. Partners with various European organizations to exchange best practices in the health sector.
  6. Is a member of Eurocarers, EUFAMI and Mental Health Europe.

Union Of Heart Patients Of Navy Officers, Coast Guard & Friends – Hellenic Navy


The Union of Hellenic Navy and Coast Guard Heart Patient Officers & Friends – Hellenic Navy is a humanitarian, non profit association – NGO, founded in 2010.
Our “Association” provides:

  • Direct and continuous aid to our members, active and discharged Officers and NCOs of the Hellenic Navy and Coast Guard, suffering from heart conditions, and Friends thereof.
  • Medical assistance to our members, cardiac patients and those critically ill, by donating blood (whole and Platelets) and bone marrow, for themselves or their relatives and at the same time offers guidance and supports their treatment.
  • The collection, storage and safekeeping of blood in two (2) blood banks that the association maintains and provision of lifelong learning for patients and their relatives.

Panhellenic Heart Disease Association

The Panhellenic Heart Disease Association was founded in 2022 and is the continuation of the Panhellenic Congenital Heart Disease Association, which was originally founded by a group of adults suffering from congenital heart diseases in 2005. The Association was expanded in scope to include all heart patients in our country, while strengthening our influence, range and capabilities.

The main framework of the Association remains unchanged and concerns the improvement of the daily life of patients and their families in all its aspects, including access to high quality medical services, rehabilitation, and education. The Association focuses on advocacy for and engagement with the heart disease community, as our motto is “nothing for us without us”. Our goal is to bring about permanent improvements in the social and medical care of all those with heart conditions and their families.

Our members are children and adults with any type of cardiovascular disease and their families, and we engage as well with stakeholders, medical providers, practitioners and volunteers.


SzivSN Hungary

SzivSN Territorial Patient Society

The staff of the Semmelweis University Cardiology Center and the patients were established by the HEART (We help you!) A nationwide patient association. The aim of the program is to allow patients with infarction, hypertension, arrhythmia, congenital heart disease, pacemaker, ICD to voluntarily join the association.



At Croí, our aim is to lead the fight against heart disease and stroke, with a particular focus on the West of Ireland. Our mission is to prevent disease, save lives and promote recovery & wellbeing. Our work is funded from the proceeds of fundraising events, voluntary contributions and philanthropy. We are deeply grateful for the support and endorsement of our donors, supporters and volunteers who give so generously of their time and resources.

Heart & Stroke Voice logo

Heart & Stroke Voice Ireland (HSVI)

Heart & Stroke Voice Ireland is a patient/ survivor and carer-led alliance of those living with or affected by heart conditions and stroke in Ireland. The key aims of HSVI are to connect and unite heart patients and stroke survivors, to highlight unmet patient/ citizen needs in the area of heart health and stroke prevention and recovery, to provide a platform to develop the capacity and capability of the patient voice so that patients are recognised as equal stakeholders in their healthcare and to promote greater awareness and understanding of the need for equitable and timely access to quality treatment and care across the care journey.

The Heartbeat Trust

The Heartbeat Trust is a charity established in 2004 by Prof Ken McDonald and Dr Mark Ledwidge to support specialist clinical and research services in heart failure and heart failure prevention in Ireland.


Heart Health India Foundation

Heart Health India Foundation

The Heart Health India Foundation (HHIF) is a pioneering patient-led organisation dedicated to combating cardiovascular disease (CVD) in India. Started in 2020 as a facebook group, it stands as India’s first support group for heart patients, initiated by Ram Khandelwal and his wife Aditi after Ram’s life-altering major heart attack at the age of 33 years. Recognized as a registered non-profit, HHIF is known for its comprehensive approach to heart health, encompassing awareness campaigns, support groups, counseling services, and advocacy for heart health policies and programs. Through its vibrant online community, HHIF facilitates open discussions on cardiac health, connecting patients, families, and healthcare professionals. Its mission is to educate, support, and empower individuals affected by heart conditions, fostering a healthier, informed, and supportive environment for heart patients across India.


Israeli Heart Association

The Israeli Heart association-the only heart & cv patient organization in Israel, was founded in 2019 after recognizing the need for a national organization in Israel, that would be, not only a main address and a home for support and assistance, for heart and cardiovascular patients and caregivers, but also, play a pivotal role in increasing public awareness in Israel, to heart and cardiovascular illnesses, risk factors, ways of prevention and methods of diagnosis, treatment and rehabilitation. We communicate to the Israeli public through a bi-weekly on-line webinars on medical and health issues, news letter, healthy living campaigns and more.



Italian Heart Failure Patients Association

Our mission is the scientific knowledge of the pathology, the creation of a network of contact between patients and the encouragement of them to help and support each other through the sharing of knowledge and experiences.


The 5 main goals of AICARM are:

  1. Increase awareness and knowledge on Cardiomyopathies
  2. Contribute to research projects
  3. Increase patients wellbeing and limit the impact in the affected patients
  4. increase the level of care in this field of cardiology, identify Center of excellence and research in Italy
  5. Provide psychological and economical support to patients, if needed


Cuore Nostro / Our Heart

MISSION: Cuore Nostro / Our Heart helps people to recognize symptoms, to manage diseases in collaboration with health professionals, to connect with other people who have had the same experience so that they can return to live an active and full life without feeling alone and unrepresented.

VISION: We believe in a world where the recovery of the body passes through its most important engine: the heart, understood as an organ and as a thermometer of our emotions and our lives.

VALUES: Concreteness, Awareness, Sharing

GOAL: Our commitment focuses on fundamental pillars: information, awareness, sharing and guiding change through listening to needs, simplification and dissemination of scientific knowledge, as well as institutional involvement, in order to make awareness and understanding of heart valve diseases accessible to as many people as possible.



The Italian Society for Cardiovascular Prevention SIPREC (Società Italiana Per La Prevenzione Cardiovascolare) is the only scientific society in Italy to deal entirely with prevention.

It is the interlocutor for doctors, institutions and citizens and benefits from the presence of many specialists among its members.
Our mission: Spread the culture of cardiovascular prevention to protect people’s health.


Heart Valve Voice Japan

Our Mission: For a better life and future for people with heart valve disease.

Our team is comprised of people living with heart valve disease, working to live a better life with peers by understanding heart valve disease.

Learn more:


Par Sirdi LV

“Par” is non-governmental organization founded in November 2011, bringing together various heart and cardio vascular disease patients, as well their relatives. Our mission: To reduce the impact of heart and cardiovascular diseases by promotion of healthy living, education of society regarding the risks of diseases, ensuring the access to health care information and advocacy of patients (defending patient rights to quality medical care and information).


HFLeb_logo with a slogan

Heart Failure in Lebanon: HFLeb

Heart Failure in Lebanon (HFLeb) is a non-profit organization that is planned to help support patients with Heart Failure in Lebanon. This organization has two branches that include: multidisciplinary healthcare professionals from various disciplines medicine, nursing, nutrition, and physical therapy and a patient led organization that is being developed to help raise public awareness on Heart Failure.

American University of Beirut Medical Centre (AUBMC)

American University of Beirut Medical Centre (AUBMC)

AUBMC is an academic medical center dedicated to the passionate pursuit of improving the health of the community in Lebanon and the region through the delivery of exceptional and comprehensive quality care to our patients, excellence in education and training, and leadership in innovative research.


Sirdies Lithuania

Lithuanian Heart Failure Organisation / Širdies Nepakankamumu Sergančiųjų Asociacija

The Lithuanian Heart Failure Association is a non-profit, voluntary patient-led, national patient organisation found in 2016. The Association is uniting heart failure patients as well as caregivers by creating the heart failure community in Lithuania. LHFA is supporting access to adequate treatment and psychological assistance, participating in the development and implementation of social programs for heart failure patients as well as caregivers. Striving to promote inter-institutional dialogue in order to provide appropriate care and training for patients with heart failure as well as effective, adequate treatment. Aiming to represent and advocate the heart failure patients interests and needs, civil, social and economic rights, raise the heart failure awareness and motivate patients participation in social life.


The CVD patients’ Association Healthy Heart pursues ambitious goals to not only teach the public to avoid CVD diseases or to live with them in a quality way but also to function as an intermediary to be heard by the governmental authorities when important decisions regarding cardiovascular issues and public health are being considered. Our mission is to organize educational seminars, lectures, events, etc. by inviting professionals of medicine, sports, or healthy lifestyle for consultancy, and alongside, engage in other educational activities aimed at prevention or reduction of cardiovascular illnesses. We try to provide relevant information on CVD matters on social media, our website, and in person.



Asociación Ale

Founded in October 2004 by families Alverde Castro and Castro Careaga in Los Mochis, Sinaloa, after the death of Ale — son of Luis Eduardo Alverde and Adriana Castro — and the extraordinary experience and satisfaction, in pain, of organ donation. Ale has been responsible for awakening people to the reality of organ donation in Mexico.


ACHPA- Asociación Colombiana de Hipertensión Pulmonar and FIC Mexico

The FIC Mexico work in three main areas; cadriovascular health, cancer, tobacco control.

Fundacion Mexicana

Fundación Mexicana del Corazón A.C.

This organization watches over the cardiovascular health of the socio-economically most vulnerable population in Mexico. Organization created by the National Institute of Cardiology “Ignacio Chávez“. Its commitment is to create a health care program aimed at the population with fewer resources.

Fundacion Midete

Fundación Mídete, A.C.

Social Organization whose objective is to promote projects and citizen actions of prevention, treatment and control of overweight, obesity and diabetes.

Pacientes de Corazón

Pacientes de Corazón is dedicated to raising awareness of the impact of heart disease and improving detection, diagnosis and treatment in Mexico. The Global Heart Hub is the only umbrella organisation for cardiovascular disease patient organisations worldwide.

Vida en Genoma

Fundación Vida en Genoma

Non-profit Mexican Foundation that makes the opportune diagnosis of patients with familial hypercholesterolemia and other hereditary diseases, and later identifies families at risk through genetic study.

Salvando Latidos
(Associate Organisation)

Salvando Latidos A.C., a non-profit organization that was born on July 26, 2018, is the first civil association in Jalisco focused on the prevention, diagnosis, care, treatment and rehabilitation of cardiovascular conditions in people of all ages, mainly those in vulnerable conditions. The general objective of our organization is to contribute to improve the quality of life of social groups in vulnerable situations, guaranteeing their right to quality health so that, as a result, they can achieve their full development to the economic, social and cultural life in our society. The institution’s mission is to save as many lives as possible as a leading non-profit organization that aims to facilitate the access of vulnerable populations to care for cardiovascular diseases and their complications, and to strengthen education and prevention strategies in the population at cardiovascular risk through high-impact social projects, medical care work and excellent training of human resources in health.


Heart Club Nepal

Heart Club Nepal is an organisation comprised primarily of patients who have undergone treatment for various cardiovascular diseases. One of the main objectives of Heart Club Nepal is to raise awareness about heart diseases through pamphlets and the organisation of health camps. The club conducts monthly interactive seminars where a clinician is invited to give a talk about cardiovascular disease. The club also has help desks in hospitals to assist patients with cardiovascular conditions coming for treatment.

Heart Club Nepal Facebook


Cardiomyopathy Research The Netherlands

Within the foundation Cardiomyopathy Research The Netherlands, patients with cardiomyopathy and researchers are working together to find a solution for the congenital and genetic heart (muscle) condition cardiomyopathy.

Together with (inter) national research institutes, hospitals and other patient organizations, we promote the interests of all gene carriers and their families: by conducting scientific research into hereditary heart diseases, by identifying predisposed relatives at an early stage and by striving for better treatment.

LMNA Cardiac Foundation

The LMNA Cardiac foundation is a patient and expert network with focus on LMNA cardiac diseases. We provide information and network for both patients and experts to be able to help and speed up research and development.


Hartpatiënten Nederland/ Heartpatients Netherlands

It is the mission of Hartpatiënten Nederland to provide independent and objective support to heart patients and their loved ones, to help maintain or improve their quality of life as much as possible. We believe that cardiovascular patients should have consistent access to needed support that centres the patient’s interests. Hartpatiënten Nederland works to inform the heart patient community about important developments, connect & guide fellow patients, and offer access to medical, legal and lifestyle advice – helping people to have confidence in their hearts again.

Hartpatiënten Nederland is entirely independent & objective. We do not recieve any funding from the pharmaceutical industry, food industry, or government, and are funded completely from supportive donors from our community.

Stichting VrouwenHart

Stichting VrouwenHart, The Women’s Heart Foundation in the Netherlands, aims to generate more attention for the gender differences in heart disease, and the different ways in which heart disease can develop in women. To this end, Stichting VrouwenHart wants to form the connection between everyone involved in the women’s heart: healthcare professionals, scientific researchers, female heart patients and their loved ones, and the general public.


Michael and Francisca Foundation

Michael and Francisca Foundation

The Michael and Francisca Foundation’s mission is to create public awareness on Stroke/ NCDs and to provide encouragement, hope, and support for all those impacted by NCDs. The Foundation envisions a world where there are fewer strokes and where all stroke survivors have access to the rehabilitation and lifelong support they need during their lives. Their work is done in line with their core values of accountability, equity, and transparency.


Heart Failure Warriors Northern Ireland

Heart Failure Warriors Northern Ireland, is a patient and carer led group set up to support individuals and their families with a diagnosis of Heart Failure. Our mission is to empower and support individuals affected by heart failure. With unwavering determination, we stand as a united force against this challenging condition. We believe in fostering a community that shares experiences, knowledge, and hope, allowing warriors to find strength and resilience within themselves. The aim of our group is to provide peer support, education, advocacy, therapeutic and social activities to help individuals learn to live with their condition, aiming to build confidence and self esteem. We strive to improve the quality of life for every heart failure warrior in Northern Ireland. Together, we forge ahead, turning obstacles into opportunities, and proving that even in the face of adversity, our hearts beat strong.


The National Association of Patients with Heart and Vascular Conditions “EcoHeart / EcoSerce”

The main objective is to raise public awareness of heart disease, to educate patients and advocacy and cooperation with public administrations. We organize educational meetings for patients, we are participating in conferences and meetings with public administrations, we respond to any situation where cardiac patients need assistance.

We want to bring together patients to show support to each other in a difficult disease process and and a return to health. We also want to show that you can live actively with cardiovascular disease, although often with style, but sometimes lifestyle must change dramatically. The overriding values of the EcoSerce Association include providing cardiological patients with security in terms of access to cardiology facilities, specialists and modern treatment methods, based on the real needs of patients and the highest ethical standards.


ICDefibrillators / ICDefibrylatorzy

Our mission is to reach out to as many people as possible with implanted cardioverter defibrillators. Educating, supporting and guiding patients is our goal. We offer psychological support, doctors’ help, social campaigns, patients meetings and help for patients before and after cardiac surgeries.

As an organisation, we deal with Cardiomyopathy (dilated cardiomyopathy, postpartum cardiomyopathy, hypertrophic cardiomyopathy‹ myocarditis, heart arrhythmia, cardiopulmonary arrest, heart blocks, and cardioverter defibrillator implantation.

Stowarzyszenie Serce na Banacha logo

European Association of Patients with Heart and Blood Vessel Diseases / Europejskie Stowarzyszenie Pacjentów z Chorobami Sercowo-Naczyniowymi

Educational activity, i.e.: education, training and publishing, in the field of health care
Conducting information campaigns to increase patients’ awareness of preventive health care to prevent heart disease
Cooperation with Cardiology and Cardiosurgery Clinics in Poland
Supporting patients to increase access to modern technologies that save lives and improve the quality of life in cardiovascular diseases
Informative secondary and primary prevention for patients with cardiac problems
Caring for the impeccable ethical and professional level of members and creating appropriate conditions to raise this level.

Metal Hearts Association - logo

Metal Hearts Association / Stowarzyszenie Metalowych Serc

The association has a nationwide reach and has been operating for 25 years. The main goal of the Association is social education, widely understood prevention, promotion of a healthy lifestyle, activity of people with cardiac diseases. We conduct our activity not only through monthly face-to-face meetings, but also by publicizing the problems of cardiac patients, educational campaigns, cyclical scientific conferences, events, media activity, radio, TV, FB, and the Internet. We are advocates for patients with heart diseases, we counteract social exclusion. We are taking all actions to contribute to reducing the current epidemic of heart disease, which is still the leading cause of death in the world. We are contributing to this serious global problem in every possible way. We are the initiators of the Heart Day, the action “Przegoń Zawał”, co-partners of Przemyśl Dycha. Our representatives sit on the Patients’ Council at the Patients’ Rights Ombudsman, we have been participating in Congresses and Forums of Cardiac Patients for years, we are part of the nationwide Alliance of Cardiac Organizations.

Polish Diabetes Association

Polskie Stowarzyszenie Diabetyków / Polish Diabetes Association

In existence since 1981 and the largest patient organisation in Poland. It unites around 55 000 people with diabetes and related issues plus their families in nearly 330 regional branches across the country.

Statutory activities include direct work with patients in the entire country, as well as raising diabetes awareness in the society and officially representing diabetics, particularly in the efforts to improve diabetes care and access to proper treatment in Poland.


Portugese Heart Foundation

Portuguese Heart Foundation

As doenças cardiovasculares são a primeira causa de morte em Portugal. A prevenção é um meio para combater este flagelo e essa é a nossa missão: sensibilizar para a adopção de comportamentos saudáveis. Pequenos gestos do dia-a-dia podem fazer a diferença de uma vida!

Bate Bate Coracao

Associação Bate Bate Coração

Somos uma instituição sem fins lucrativos que tem como objetivos a sensibilização e mobilização para os temas da prevenção, diagnóstico e tratamento das doençascardiovasculares, que constituem a principal causa de morte da população portuguesa. Trabalhamos para construir uma sociedade mais informada e capaz de prevenir os fatores de risco das doenças cardiovasculares e de lidar com as suas ocorrências.

AADIC logo

AADIC – Associação de Apoio a Doentes com Insuficiência Cardíaca


Patient Alliance for Chronic Diseases

The GACD represents high quality implementation science that is peer reviewed.

Da, si eu pot!

Fighting for diabetic patients’ rights in Romania.

Asociația CardioGen

CardioGen Patient Advocacy Association

CardioGen is the association of patients with cardiac genetic diseases in Romania created for representing and protecting the interests of the patients, while contributing to the improvement of their lives. We also aim to increase the awareness about the cardiac genetic diseases and inform the patients and their families about them. We want to create a safe group where the people can come and share their stories to support and encourage others that are going through similar experiences.

Asociatia Pacientilor cu Afectiuni Cardiovasculare Pro Cardio /

Association of Pacients with Cardiovascular Diseases Pro Cardio

The purpose of establishing this association is to lobby and advocate for patients with cardiovascular diseases as well as to defend their rights, we also want to increase the level of awareness among the Romanian population regarding the burden of cardiovascular diseases and request actions from the decision-makers at national and European level.

The lack of screening programs and medical education keeps patients away from diagnosis and treatment.

Despite the multiple benefits that cardiac recovery programs represent, they face important barriers in Romania, such as the lack of appropriate funding, state or even private specialized centers and the lack of a legal framework for their implementation.


Stroke Action Rwanda

Umuryango w’Abarokotse Stroke mu Rwanda / Stroke Action Rwanda

Stroke Action Rwanda’s mission is to fight cerebrovascular accidents and reduce the burden on the victims through prevention, treatment and long term medical care. They work to inform the public about the dangers of cerebrovascular accidents (strokes) and the value of their prevention, as well as collect, analyze and use professionally the data on stroke patients in respect of privacy and confidentiality.

Stroke Action Rwanda advocates for the proper care of stroke patients from physicians, their respective family members and the Rwandan Community in general, and engages in partnership with various organizations involved in stroke prevention and control from both inside and outside the country. They also promote the creation of post-stroke rehabilitation centers in the community, research on CVA, and income generation projects to improve the well-being of stroke survivors.

Link to Facebook


Slovenian Heart Foundation

The Slovenian Heart Foundation (originally Društvo za zdravje srca in ožilja Slovenije) is a humanitarian non-governmental organisation that has been operating in the public interest in the field of health care since 1991. The Foundation carries out its activities throughout Slovenia. It includes 9 branches and two independent associations (the Regional Heart Foundation for Maribor and the Podravje Region as well as the Regional Heart Foundation for the Pomurje Region) with over 8,000 members altogether.


Association of Coronary Societies and Clubs of Slovenia

Association of Coronary Societies and Clubs of Slovenia is a representative organization of Slovenian coronary patients. We are taking care of the third phase of modern comprehensive rehabilitation of coronary patients, taking place after patients return to their home environment, that is, after their release from hospital (phase 1) and guided rehabilitation in spas or as out-patient (phase 2). It is based on professionally managed and safe physical training carried out by specially trained practitioners with medical education and under supervision of cardiologists, members of societies’ Expert councils. Training is based on professionally verified guidelines of Slovenian cardiology. During 2019 we carry out training in 143 training groups in 81 locations in Slovenia.

Within Association and Societies we take care of continuous patients’ education and familiarization with the latest findings of the cardiology profession, enabling coronary patients to take independent, responsible and autonomous decisions related to maintaining and strengthening their health.

An important part of our work is introduction of various forms of socializing, knitting a social network among individuals with the same problems. We offer psychosocial support for solving problems with experiences of anxiety and depression, which are very common to cardiovascular patients.

Our Association offers member societies and clubs a support in the implementation of comprehensive lifelong rehabilitation, particularly in the training of rehabilitation practitioners and other program providers and in the provision of financial resources.

Activities of Associations’ Expert council ensure modernization of existing programs and development of new forms of work for individual groups of coronary patients. Association cooperates with Association of Cardiologists of Slovenia and with other professional institutions and ensures that activities carried out by Societies and Clubs are always coherent with the modern guidelines of the cardiology profession.

Koronarni Klub Ljubljana / Coronary Club of Ljubljana

The Coronary club of Ljubljana (KKL) provides lifelong rehabilitation for cardiovascular patients. KKL is a humanitarian NGO, established in 1982. KKL provides an interdisciplinary approach to rehabilitation, combining doctors, physiotherapists, kinesiologists, nurses, psychotherapists and others. A committee of experts approves and oversees the work of the organisation. We provide: specialized exercise programmes (aerobic-dynamic exercise, the G-I-O programme, exercises for patient with limited mobility), health support (individual consultation with cardiologists and nurses), psychotherapy, health camps, socializing and health monitoring. Our integrated programme includes many innovative elements and is supported by ongoing research programmes.

KKL was the model for establishing the Association of coronary clubs of Slovenia. Our organisation is supported through the volunteer work of patients and funded by membership fees, projects and donations.


AEPOVAC Spain - logo


We are a group of volunteers who aim to help patients and family members with cardiac prostheses and / or anticoagulated with any cardiovascular disease and sensitize the population of the importance of heart disease in the loss of quality of life.


Associació Gironina de Prevenció i Ajuda a les Malalties del Cor (GICOR)

We are a non-profit organization whose objectives, among others are to:

  • Promote and disseminate the prevention and control of diseases of the heart.
  • Help monitor the major risk factors (hypertension, cholesterol, smoking, diabetes …)
  • Raise awareness about the need to create hearthealthy habits.
  • Promote self-esteem after heart disease.
  • Encourage activities to improve the quality of life.
  • Collaborate with the Ministry of Health in health planning.


Asociación de Enfermedades Cardiovasculares Corazón sin Fronteras

We are a non-profit association for the promotion and prevention of cardiovascular disease in Spain.

Asociación para Pacientes y Familiares con Síndromes Arrítmicos relacionados con la Muerte Súbita (SAMS)

Decrease sudden death cases in Spain increasing awareness of genetic cardiomyopathies and channelopathies by organising:

1. SAMS conferences every year with participance of well known cardiologists, genetists, gynaecologists, sexologist, etc.

2. Giving psychological support to all our patients and empowering expert patients.

3. Providing free workshops to schools in Spain to show pulmonary resuscitation and use of external defibrillator.

4. Developing our project of entities with heart to cardioprotect enterprises that will sponsor workshops in schools.

Cardio Alianza

Cardio Alianza “The Spanish Association of Heart Patients”

Cardioalianza is a non-profit association, formed in 2014, which brings together 16 organizations of patients with cardiovascular diseases (CVD) in Spain.
Cardioalianza are dedicated to improving the quality of life and well-being of people with CVD.

Plataforma pacientes fundación española corazon logo

Plataforma Pacientes Fundación Española Corazon / Patient’s Forum of Spanish Heart Foundation

An organization with more than 50 years of experience that carries out primary and secondary prevention in cardiovascular disease of public utility and that unifies the voice of patients and the Spanish society of cardiology.


FOKUS Patient

Penilla Gunther is the initiator of FOKUS Patient® together with a SME Business Network called Combrigade, based on her experience from eight years in Swedish Parliament, ending 2018. She established a “Network for Equal Care” which purpose was to invite and discuss with all parts of the healthcare system, agencies, Life Science companies and not the least, the Patient Movement.

FOKUS Patient® is now beginning to change the environment and experience of patients, and the need of understanding of their context. There cannot longer be patients representing other patients in medical advisory boards or official patient councils, who are perceived as only protecting their personal interests, but as qualified expert patients, well briefed of the Health Care system , patients rights, beside expert knowledge experience from their own diagnosis.

But FOKUS Patient® is also a part of strengthening the ties between Life Science companies, patients, agencies, health care professionals and politics. As an independent actor, FOKUS Patient® is free to discuss any issue, invite all and to co-operate with anyone who shares the same interest: To really put the patient perspective in FOKUS!

In 2020 FOKUS Patient was a finalist in Reuters Events Pharma Awards Europe, in the category of “Patient Champion Award of Patient Advocate”.

Hypertrofisk Kardiomyopatis Svenska Sällskap

HCM Svenska / Hypertrofisk Kardiomyopatis Svenska Sällskap

  • Providing information about HCM to patients and relatives.
  • Providing support and guidance for patients with HCM and their families.
  • Providing on-the-job training materials for health care staff on HCM.
  • Helping to strengthen the Swedish health care system in the testing, diagnosis, treatment and follow-up of HCM.
  • Providing similar support also for the other Nordic countries as needed until they establish their own HCM patient organizations.


Heart to Heart Foundation

Heart to Heart Foundation

The Heart to Heart Foundation (HHF) was established to bring together patients with chronic diseases that require high-cost treatments such as cancer, heart diseases and kidney diseases to provide them with the ability for self-care and care for fellow patients for improved quality of life, to help the healthcare providers as volunteers in order to reduce their work load, and to improve the healthcare system. The HHF stresses the importance of communicating with society as a whole to foster knowledge, understanding and new attitudes towards chronic disease care and chronic disease patients.


Aortic Hope - Logo

Aortic Hope

Aortic Hope (501c3) is a globally recognized organization that spreads hope, creates awareness, and provides support to patients and caregivers during the recovery and management of Aortic Disease.

This is achieved through providing accurate information, virtual support groups, resources such as Aortic Dissection: The Patient Guide, which was written by patients, clinically reviewed, and endorsed by the Society of Thoracic Surgeons and Society for Vascular Surgery and so much more.

DCM Foundation

Our mission provides HOPE and support to patients and families with Dilated Cardiomyopathy through research, advocacy, and education.


DiabetesSisters is a 501(c)3 nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and to advocate on their behalf.

Children’s Cardiomyopathy Foundation

The Children’s Cardiomyopathy Foundation (CCF) is a national organization focused on pediatric cardiomyopathy (CM), a chronic and potentially life-threatening heart disease that affects how the heart pumps blood through the body. Cardiomyopathy is a leading cause of heart transplants and sudden cardiac arrest in the young.

CCF’s mission is to accelerate the search for causes and cures for pediatric cardiomyopathy through increased research, education, awareness, advocacy, as well as to support affected children and their families.

RESEARCH: Advocate for and fund research initiatives into the causes, diagnosis, and treatment of pediatric cardiomyopathy.

EDUCATION: Offer reliable and easy-to-understand information to families, and educate medical professionals about the latest advances in the evaluation and medical management of pediatric cardiomyopathy.

AWARENESS & ADVOCACY: Generate recognition and understanding of pediatric cardiomyopathy among the general public, legislators and the medical community.

FAMILY SUPPORT: Provide educational resources and support services to those affected while fostering a caring community of cardiomyopathy families.

Foundation for Sarcoidosis Research

Sarcoidosis is an inflammatory condition that is marked by granulomas forming in the organs. FSR is committed to research and treatment of cardiac sarcoidosis.

Researchers suggest sarcoidosis of the heart, or cardiac sarcoidosis, affects more than 10 percent of people with sarcoidosis in the United States, and perhaps as many as 25 percent. Because heart problems can be very serious, everyone who has sarcoidosis should be screened for cardiac sarcoidosis. Diagnosis of cardiac sarcoidosis is difficult. Some people with heart involvement might notice symptoms, but many people will feel no obvious effect, even in late-stage disease. The problems caused by cardiac sarcoidosis can include: Arrhythmias, Heart blocks, Heart failure, Pericarditis, Heart valve problems, and Heart attacks. FSR provides educational programming, support programming, and research in cardiac sarcoidosis.

Harboring Hearts

Harboring Hearts is a 501(c)(3) organization that provides emergency housing, transportation, food, and other critical resources to transplant and cardiac surgery patients and their families. We work with 8 partner hospitals throughout New York to provide a safety net to families during their critical time of need. We do this through our 4 main program verticals: Emergency Fund, Community Events, Hope 4 Hearts Day, and Caregiver Food Delivery.

HeartCharged Corporation Logo


The mission of HeartCharged is to end preventable deaths from cardiac conditions and sudden cardiac arrest and offer support for those affected by such conditions.

One of our main objectives is authentic representation in media which would lead to more global understanding of the scope of cardiac conditions.

Our work addresses the needs before, during, and after a cardiac event. We advocate for awareness of symptoms and heart screenings. We train people, donate AEDs, and call for more people trained and more AEDs available when a cardiac emergency happens. We provide support through our community to those who have been impacted by a cardiac condition. We spread real understanding, genuine gratitude, and body positivity.

Heart Failure Patient Foundation


We raise awareness with information, education, networking opportunities, and related resources to improve the quality of life of patients with heart failure, their families, and caregivers.


To see patients with heart failure, families, caregivers and advocates empowered with the best available information, to ensure optimal quality of life.


  1. Promote awareness, prevention and treatment of heart failure.
  2. Provide access to information and educational resources to patients with heart failure, families, caregivers and healthcare providers.
  3. Facilitate networking opportunities for patients with heart failure, families, caregivers and healthcare providers to share heart failure information.
  4. Increase heart failure awareness among influential groups and the public.
  5. Engage key stakeholders who will champion development and implementation of educational resources
  6. Promote heart failure nursing education and research

Heart Valve Voice US

Heart Valve Voice US, a patient-led organization, exclusively focuses on improving the diagnosis, treatment and management of heart valve disease by advocating for early detection, meaningful support, and timely access to appropriate treatment for all people affected.

Hypertrophic Cardiomyopathy Association

The Mission of the HCMA
Providing support, advocacy and education to patients, families, the medical community and the public about hypertrophic cardiomyopathy, while supporting research and fostering development of treatments.

The Values of the HCMA
To be the pre-eminent organization improving the lives of those with HCM, preventing untimely deaths and advancing global understanding.

The Objectives of the HCMA

  • Develop and maintain a network of support for individuals with HCM and their families.
  • Promote education about the symptoms and treatment options for patients, their families, and their medical providers.
  • Heighten awareness and protect against sudden cardiac arrest and life threatening arrhythmias and their prevalence within the HCM community.
  • Increase the number of, and access to, healthcare professionals providing evidence-based treatment of HCM.
  • Promote research of HCM and broaden access to results with the ultimate goal of eradicating the disease.
  • Increase awareness and provide education to the medical community about HCM.
  • Positioning the Foundation with adequate budget, staff and volunteer leaders to fulfill the mission, vision and goals.

In A Heartbeat - Logo

In A Heartbeat

In A Heartbeat exists to prevent death from sudden cardiac arrest. This is done by donating AEDS, raising money for research, providing CPR/AED training, supporting patients, and offering free electrocardiograms to children, teens, and young adults.

The Mended Hearts - Logo

Mended Hearts

The Mended Hearts, Inc. (MHI) is the world’s largest peer-to-peer cardiovascular patient support network. Formed in 1951, MHI has been offering hope, support, education, encouragement, and advocacy to heart disease patients and their families for nearly 71 years.

We also offer support and education to heart patients with related diseases, such as diabetes and obesity.  Our Mission is “To inspire hope and improve the quality of life of heart patients and their families through ongoing peer-to-peer support, education, and advocacy.”  Today, MHI has over 72,000 members residing in 20 countries.

Heart of a Giant Foundation

The Heart of a Giant Foundation (HGF) is a Boston-based 501(c)3 organization dedicated to impacting communities for the better, with a mission to eliminate preventable harm attributable to and improve the management of chronic health conditions in our communities. Heart of a Giant through a multi-level intervention program empowers people to become active agents in their health care and well-being and improve their quality of life and health outcomes. We improve health through better health education, care plans, and greater community involvement. We work to amplify patient voices; we align resources and a culture of care that fosters better health outcomes — not just locally but globally.

Hearts of Valor Inc

Hearts of Valor Inc. is a 501c3 public health, non-profit organization dedicated to education, prevention, and treatment management of cardiovascular diseases. This is accomplished by providing information and resources via community outreach programs and spreading awareness through participation in local events.

Heart Sistas - Logo

Heart Sistas Inc.

At Heart Sistas, our mission is to empower and engage underrepresented minority women and families to become advocates for their health. We strive to reduce the prevalence of heart disease, strokes, and related illnesses by providing access to information, and healthcare resources, and collaboratively working with organizations.
By working together, we can make a difference in the lives of those affected by those debilitating conditions to live healthier lives.

Her Heart Sounds logo

Her Heart Sounds

The mission of Her Heart Sounds is to provide cardiac support programs to improve women’s cardiac outcomes and quality of life post-cardiac event, especially those who have experienced Spontaneous Coronary Artery Disease (SCAD).
Our objectives are to implement cardiac support programs within hospitals beginning early 2023. These will include a PTSD inpatient prevention program, virtual cardiac support discharge lounge, women’s only cardiac rehab component within existing cardiac rehab programs, and SCAD cardiac rehab protocols.

Preventive Cardiovascular Nurses Association

The Preventive Cardiovascular Nurses Association is the leading nursing organization dedicated to preventing cardiovascular disease through assessing risk, facilitating lifestyle changes, and guiding individuals to achieve treatment goals.

Rock from the Heart logo

Rock from the Heart

Rock from the Heart’s mission is to proactively educate people about aortic and heart valve disease, bridge the gap between impacted families and the support they need, connect those diagnosed with vital resources, and inspire all through the healing power of music. We are a virtual family of educators, survivors, caregivers, and music fans working to create an inclusive and engaged community of support, encouragement, and awareness.

We offer support, resources, and educational programs for patients and their families. Knowledge is power, and we empower people affected by aortic disease with information to assist them in making informed decisions. We also use the power of music to uplift the spirits of people and families affected by aortic disease, and provide an opportunity to connect with survivors at each benefit concert.

Sudden Arrhythmia Death Syndromes (SADS) Foundation

The Sudden Arrhythmia Death Syndromes (SADS) Foundation mission is to save the lives and support the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities. Our patient and family support program provides access to information, resources, research, and support to individuals who are dealing with genetic conditions that cause sudden cardiac death in the young, or who have lost a loved one to sudden unexplained death. We also provide information to and education of medical professionals. The SADS Foundation is a community of families, medical professionals, researchers and supporters saving lives and advancing care for people with heart arrhythmia conditions that can lead to sudden death.

Team Titin, Inc.

Changes in the TTN (titin) gene cause a spectrum of muscle and heart disorders that range from rare to common and can have a negative impact on health and quality of life. Although there are many charities in place that help people living with neuromuscular or heart disorders, Team Titin, Inc. focuses specifically on the spectrum of disorders caused by changes in the TTN (titin) gene.



WomenHeart: The National Coalition for Women with Heart Disease was founded in 1999 by three women who had heart attacks while in their 40s and faced
many obstacles, including misdiagnosis, inadequate treatment, and social isolation.

United Kingdom

UK ATTR Amyloidosis Patients’ Association (UKATPA)

UK ATTR Amyloidosis Patients’ Association works to:

  1. provide information, support and advice to people living with the Condition, their families and carers;
  2. advocate to ensure that every person has timely and effective diagnosis, treatment, and care of the Condition;
  3. collaborate with all stakeholders to facilitate the availability of effective treatments for the Condition.
  4. fund and support research to advance scientific understanding of the Condition and its effective treatment and to publish the useful results thereof for the public benefit

Cardiomyopathy UK

Cardiomyopathy UK is the specialist national charity for people affected by cardiomyopathy and related diseases of the heart muscle. We provide support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research.

Defibbers Cymru logo

Defibbers Cymru

Gwent Defibbers is an ICD / CRTD Support Group for patients and their partners in the South-East Wales area. The group support patients who have an ICD / CRTD fitted, and they meet every three months. Guest speakers are invited to talk about subjects that have been requested by our members, and members can receive patient-friendly information and peer counselling. Gwent Defibbers covers seven health boards and nine hospitals in Wales.

Heart Valve Voice

Heart Valve Voice is the UK’s dedicated heart valve disease charity. We work with patients and clinicians to help increase the awareness of heart valve disease in the UK and improve diagnosis and treatment. Heart valve disease affects over 1.5 million people over the age of 65 in the UK and while there have been many advancements in the treatment of this disease the unfortunate fact is that far too many people are not being diagnosed and treated early enough.



SADS UK supports people living with cardiac conditions, funding research and organising medical equipment to assist. Liaising with Government agencies and working in the areas of education, research, prevention and emergency care, the charity works to improve the treatment and wellbeing of people living with cardiac conditions.

The British Society for Heart Failure Patient Advisory Panel

We, the British Society for Heart Failure (BSH) Patient Advisory Panel advise and educate doctors, nurses and allied specialists working in hospitals and the community, NHS England and Improvement and in the devolved nations, so we can together improve care for patients with heart failure.

The advice and guidance of a heart failure specialist is essential for planning care and for specialist intervention. All patients with chronic conditions should have access to a multi-disciplinary team. Those patients who need the expertise of a heart failure specialist should have access to one. It is our intention as BSH Patient Advisory Panel to continue to grow awareness of lived experience of the condition to the burgeoning network of HF specialist throughout the country so no patient in need goes without the care they require.

Together, we intend to make heart failure a national priority through our work, research and education, with the aim of preserving life, increase survival and improve quality of life for the nearly 1 million of us living with heart failure in the UK today.

Timothy Syndrome Alliance Logo

Timothy Syndrome Alliance (TSA)

Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders including Timothy Syndrome and LongQT8, and to support the families and carers of those diagnosed.

There is a wide spectrum of physical presentation associated with changes in the CACNA1C gene including cardiac, severe epileptic encephalopathy, hypoglycaemia, developmental delay/intellectual disability, hypotonia, digestive issues, autism spectrum disorder/ADHD, dental issues, syndactyly and/or hip disorders. There are currently no treatment options.

We raise awareness on all aspects of Timothy Syndrome, LongQT8 and CACNA1C-related disorders among the general public, medical & research communities, promoting relevant research, connecting families with each other as well as experts and researchers at TSA conferences and providing information and education on our website.


National Stroke Aid (NASAID)

Our mission is to reduce the raising number of premature deaths as a result of stroke attacks by promoting the adoption of healthful living in daily lifestyle.

Our vision is to promote cardiovascular and cerebrovascular (CVDs) health through advocacy, influencing policy, providing information tools and support to empower people to adopt healthy life style and seek appropriate health care in manifestation of the disease and assist in making healthier choices easy.

Our objectives are centered on advocacy and rehabilitation on stroke and all its underlying causes, we also involved in various health promotion activities.

Zambia Heart and Stroke Foundation

Zambia Heart and Stroke Foundation

Zambia Heart and Stroke Foundation’s mission is to play a leading role in inspiring hope and improving the lives of heart and stroke patients and their families, and on the prevention and reduction of Cardiovascular Disease (CVD) with main focus on low income population, so that it will no longer be a major cause of premature death and disability in Zambia.

  • We create an inclusive and compassionate community, ensuring that heart and stroke patients and their families are not neglected in society.
  • We provide relevant resources and knowledge, empowering heart and stroke patients and their families to make informed decisions about their healthcare.
  • We engage heart and stroke patients and their families in advocacy efforts, enabling them to make decisions that enhance their quality of life and access to treatment.
  • We advocate for public health policy improvement on the patients and collaboration with policymakers including the Zambia National Heart Hospital.

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