Use two fingers to move about and zoom in/out on the map
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.
Her Heart is a health promotion charity and registered not-for-profit that aims to educate women on the risks of 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 take control of their lives and make the necessary changes to decrease their risk of developing heart disease. It’s well-documented that funding more research will not drive change – it’s time we moved beyond the rhetoric and start taking action.
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.
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.
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.
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 & Stroke Foundation
For more than 60 years, Heart & Stroke has been dedicated to fighting heart disease and stroke. Our work has saved thousands of lives and improved the lives of millions of others. You’ll probably run into someone today who is alive and well thanks to the countless Canadians who have supported our cause with their time and donations.
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.
Registro Icaro – Sociedad Chilena de Cardiología
Registry of Chilean patients with heart failure.
Fundación Cardiovascular Dr. Jorge Kaplan Meyer
Fundación was created in 1992 with the aim of preventing cardiovascular diseases in both adults and children. It also promotes the development of reaseach and treatment of CV diseases. The organisation provides education and dissemination of information regarding care and disease risks of patients and the community in general.
ACOPEL – Asociación Colombiana de Pacientes con Enfermedad de Depósito Lisosomal
ACOPEL seeks to contribute to the elimination of barriers ranging from diagnosis to treatment. ACOPEL’s main objective is to help patients with lysosomal storage diseases in the search for solutions for their integral treatment and to provide the required assistance to patients, family members, medical staff,
health institutions and those interested in the detection, knowledge, management and treatment of diseases of lysosomal deposit.
A non-profit organization with more than 11 years of experience in public policies and activities orientated to the welfare and quality of life of our users.
Red Colombiana de Hipercolesterolemia Familiar
RedCol HF is a support network for patients diagnosed with Familial Hypercholesterolemia ascribed to the Colombian Association of Patients with Lysosomal Deposit Diseases, ACOPEL.
Fundación Red de Apoyo Social de Antioquia: RASA
Non-Governmental Organization that promotes the effective enjoyment of the right to health of people affected by chronic diseases.
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.
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.
Herzschwacehe Franken E.V
Heart failure Franken E.V. 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
Epioni, the Greek Carers’ Network
Our aim is to provide continuous and quality support services for individuals who work as informal, unpaid carers of family members or friends who are struggling with physical or mental illness, disability or addiction.
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.
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.
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.
Department of Medical-Surgery Sciences and Translational Medicine, University La Sapienza Rome, Sant’Andrea Hospital
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 support organization founded in 2016. It unites heart failure patients and advocates on behalf of them. Cardio patients and their families have taken up the most active roles. The Association addresses medical practitioners and healthcare policy makers on their members behalf, calling for a mutual dialog and advocating for access to adequate treatment and psychological assistance, participate in the development and implementation of social programs, according to people with heart failure. Ms. Tatjana Pirmaitiene is President of Lithuanian Heart Failure Association and Ambassador for heart failure sufferers.
Sabah Heart Centre
QEH2 Department of Cardiology, or “Sabah Heart Centre” is the only public tertiary hospital providing tertiary cardiology, cardiothoracic surgery and paediatric cardiology services.
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.
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 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.
Let the Beat Go On
“Let the beat go on’’ coaches and supports people with heart diseases and heart failure. Let the beat go on offers courses in creative stress management and in mindfulness. Creative stress management training gives you more insight in the physical effects of stress; how your brains, body and heart (rhythm) respond and how you can use your emotional brakes. The training is based on the cognitive therapy of the US psychiatrist Aaron T. Beck. Often, patients experience ‘life events’ such as resuscitation, interventions and sometimes experiencing near death.
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.
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.
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.
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.
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.
Mended Hearts is a national and community-based non-profit organization that has been offering the gift of hope to heart disease patients, their families and caregivers. To offer this hope Mended Hearts provides a variety of programs.
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 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.