ARVC patient association
for Germany, Austria and Switzerland
Getting diagnosed with ARVC can be a profound turning point in someone’s life. It is a challenge not only for the individual, but for whole families. Hence, the wish for the exchange of experiences with others arose.
Together with other ARVC patients and relatives, we founded the ARVC Self Help Group (ARVC-Selbsthilfe) in summer 2013. We organize regular meetings with lectures, and are constantly developing our activities. Since October 2018 we have been a registered association based in Munich – Germany.
Please read our leaflet for more information on our patient association and on ARVC.
> Leaflet (PDF)
ARVC patient community on RareConnect
RareConnect is an online patient platform set up by the European patient organization for rare diseases (EURORDIS) in order to enable patients and their relatives to exchange ideas and experiences. It has an ARVC community moderated by members of ARVC-Selbsthilfe (our German patient organization).
RareConnect is available in twelve languages. While its ARVC community was initiated in Germany, it is international and a safe place to be. It conforms to European data protection law (GDPR).
We look forward to welcoming ARVC patients from all countries to our ARVC community on RareConnect!
One useful aspect of this platform is its search feature under “Search within the community”. For example, searching for “heat” will give you a listing of all previous posts on that topic.
European Patient Advocacy Group
We represent the interests of ARVC patients and relatives on a European level. Since November 2018 we are the only approved German member of the European Patient Advocacy Group (ePAG) of the European Reference Network of Rare and Uncommon Diseases of the Heart (ERN GUARD-Heart).
Since August 2019 our chair Ruth Biller is chair of the European patient advocacy group.
You’ll find many interesting articles and brochures for patients on our website here > Articles, Links
You can download the lists of articles with English (and German) titles and links for each topic area.
> Brochures and information for patients (Download PDF)
> General information and articles on ARVC (Download PDF)
> Articles on diagnosis, diagnostic criteria, differential diagnosis and risk stratification (Download PDF)
> Articles on genetics (Download PDF)
> Articles on therapies (Download PDF)
> Articles and Links to defibrillators (ICDs) (Download PDF)
> Articles on psychosocial issues (Download PDF)
> Articles on ARVC and sports (Download PDF)
> Articles on pregnancy, preimplantation genetic diagnosis (PGD) and Children – pediatrics (Download PDF)
> Articles on research (Download PDF)
> Articles on registries and programs (Download PDF)
> Articles on sudden cardiac death, syncopes and arrhythmias (Download PDF)
> Other topics, special questions (law, nutrition) (Download PDF)
> Helpful institutions, associations and societies (Download PDF)
> Memories of personalities with ARVC
If you have any questions, please don’t hesitate to contact our chair Ruth Biller via email at firstname.lastname@example.org