ARVC-Selbsthilfe e.V. (Arrhythmogenic Cardiomyopathy Association Germany)
- Familial Cardiomyopathies
- Arrhythmogenic cardiomyopathy
- (Dilated cardiomyopathy)
- (Hypertrophic cardiomyopathy)
- (Restrictive cardiomyopathy)
- (Non-compaction cardiomyopathy)
- Other Rare Cardiac Diseases
- Sudden cardiac death
- Grief support
Aims of the organization are:
- Facilitate timely diagnosis (within less than one year after symptom onset)
- An improvement in (mutation specific) risk assessment
- Updated guidelines with the participation of patient representatives and their systematic implementation
- Evidence-based advice on lifestyle, sports and treatment options
- Enable patients and families to make informed medical decisions driven by their needs
- Encourage research and promote the development of new therapeutic approaches
- Provide information and education of affected patients and their families on the disease
- Enhance adequate psychosocial care and support for affected families based on disease specific PROMs (patient reported outcome measures)
- Provide peer-to-peer support
- Help to realize a long life and best quality of life despite all challenges for patients living with the disease
- Increase public awareness of rare heart diseases and their warning signs
- Save lives and prevent cases of sudden cardiac death in the young
To increase patients’ knowledge of ARVC, we hold expert lectures and Q&A sessions with experts. Our website offers a lot of information material in patient-friendly language.
We advise patients to find the right expert center and support patients and families after being diagnosed with ARVC.
We contribute to patients’ mental health and well-being by sharing experiences and good practice through online meetings, patient weekends and a moderated patient chat forum.
Our scientific advisory board helps us to solve acute problems for the benefit of those affected and to keep up to date with the latest scientific findings and the state-of-the-art in diagnosis and therapy of the disease. We promote research at ARVC through annual doctoral scholarships, through patient recruitment for studies and through participation in international projects.
Through awareness campaigns and articles in various media, we try to ensure that ARVC and other genetic heart diseases that can lead to sudden cardiac death are more in the public focus. By having a large network of clinicians, researchers and other patient organisations, we ensure that the patient perspective is better perceived.