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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.
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 is Australia’s only not-for-profit focused on the prevention of women’s heart disease. As it has been found that the death of women due to heart disease is largely preventable, Her Heart aspires to educate and empower women to make the necessary changes to decrease their risk of developing heart disease. Our Mission is to:
· Improve the heart health of Australian women with long-lasting impact
· To be the ‘go-to’ place for women to access accurate information
· To make women’s heart health a top priority in the health, government, business and community sectors
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 (HS-A)
Heart Support Australia is the national body providing support, services and information for people who have experienced a cardiac event. The National Office supports Heart Support Australia’s role as a Peak Body through information, engagement and collaboration with partners from across the health sector. Heart Support Australia also has a network of Branches and interest groups across Australia delivering information, education and support to individuals and their carers.
Cardiomyopathy Association of Australia
Cardiomyopathy Australia is a registered, voluntary, charitable organisation supporting people with all forms of cardiomyopathy, and their families.
ABRAF – Brazilian Pulmonary Hypertension and Related Diseases Association
ABRAF is a private non-profit organization whose objective is to support the community affected by Pulmonary Hypertension and Related Diseases through awareness, support and promotion of public policies. The organization was founded by Paulo Menezes on October 27, 2006. After the diagnosis of Pulmonary Hypertension of Maria Cristina (wife of the founder) in 2005, the family found itself completely helpless and voiceless and decided to gather the patients to spread the word out. Among its activities, ABRAF has four main focus areas:
- Patients and caregivers: meetings, support groups, legal advice.
- Health professionals: acting not only in partnership, but also for these professionals, Abraf seeks to promote the exchange of experiences, classes and updating on scientific topics.
- Population: awareness campaigns, with the aim of promoting the early diagnosis of pathologies and, consequently, better quality of life.
- Advocacy: through specific strategies for each case, Abraf seeks to influence decision-makers in the design and implementation of public policies that benefit patients.
ADJ – Diabetes Brasil
Association founded in 1980 to address Type 1 Diabetes; now works in the education and empowerment of patients with Diabetes and cardiovascular diseases, with the main banner of “Educate to Prevent”.
Associação Brasileira de Hipercolesterolemia Familiar
On May 21, 2014, the AHF was founded, formed by patients and relatives. It has the support of medical experts as part of the Scientific Council. Our mission is to educate society about HF, promote equal access to diagnosis and treatment, and make an alliance with all stakeholders to improve the treatment rates of the disease.
Associacao Amigos Do Coracao
We promote the humanization of the hospital environment and improvement in life quality of the patients in treatment at the Instituto Do Coracao.
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.
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: https://www.heartpatientalliance.ca/
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: https://www.sads.ca/
Diabetik KV, Z.Ú.
We are a non-profit organization dedicated to the target group of people with diabetes and cardiovascular disease.
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
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.
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).
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 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
Greek Carers Network – EPIONI
Greek Carers Network EPIONI is a national non-profit organization established in 2016 by a group of citizens who are caregivers or former caregivers. We advocate for individuals who work as informal, unpaid carers of family members or friends who are struggling with physical or mental illness, disability or addiction.
Panhellenic Congenital Heart Disease Association
The Panhellenic Congenital Heart Disease Association is a non-profit and non-governmental organization founded in 2005.
- In general, our goal has primarily to do with the representation of our members in any conceivable field and in any possible way making life conditions better for us all.
- Advocacy and engagement are of extreme importance, really imperative.
- Our motto has since been and still is “nothing for us without us”.
- Our members are children and adults with congenital heart disease or defect, adults with any type of cardiovascular disease and their families in some cases, even medical providers, practitioners and volunteers.
Considered extremely crucial:
- Bringing about permanent improvements in the social and medical care of children with heart conditions and their families.
- Providing advice, information and practical support according to the needs of our stakeholders.
- Bringing together patients of all ages etc.
- We are a member of the European Congenital Heart Groups.
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.
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.
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:
- Increase awareness and knowledge on Cardiomyopathies
- Contribute to research projects
- Increase patients wellbeing and limit the impact in the affected patients
- increase the level of care in this field of cardiology, identify Center of excellence and research in Italy
- Provide psychological and economical support to patients, if needed
Heart Italy – Heart Valve Voice is an association that adheres to the European Heart Valve Voice network, created to introduce heart valve diseases, the chance to discover them, diagnose them and treat them.
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: https://heartvalvevoice.jp/
Par Sirdi LV
“Par Sirdi.lv” 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).
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)
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.
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.
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.
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.
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.
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 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 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.
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.
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.
The National Association of Patients with Heart and Vascular Conditions “EcoHeart / EcoSerce”
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.
The Heart on Banacha Association / Stowarzyszenie Serce na Banacha
• 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 / 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.
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!
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.
Patient Alliance for Chronic Diseases
The GACD represents high quality implementation science that is peer reviewed.
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.
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.
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 “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.
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”.
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 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.
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.
- Promote awareness, prevention and treatment of heart failure.
- Provide access to information and educational resources to patients with heart failure, families, caregivers and healthcare providers.
- Facilitate networking opportunities for patients with heart failure, families, caregivers and healthcare providers to share heart failure information.
- Increase heart failure awareness among influential groups and the public.
- Engage key stakeholders who will champion development and implementation of educational resources
- 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
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, 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.
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.
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.
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.
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.
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.
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.
UK ATTR Amyloidosis Patients’ Association (UKATPA)
UK ATTR Amyloidosis Patients’ Association works to:
- provide information, support and advice to people living with the Condition, their families and carers;
- advocate to ensure that every person has timely and effective diagnosis, treatment, and care of the Condition;
- collaborate with all stakeholders to facilitate the availability of effective treatments for the Condition.
- 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 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.
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.
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 (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.
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