The diagnosis 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 in summer 2013. We are organizing regular meetings with lectures, and are constantly developing our activities. Since October 2018 we are 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 platform on RareConnect
There is an online patient community for all ARVC patients and their relatives, where they can exchange ideas with others who are in a similar situation. The European patient organization for rare diseases EURORDIS has set up this platform, it corresponds to European data protection guidelines (GDPR). Two members of ARVC-Selbsthilfe, the German patient organization for ARVC patients, support the ARVC community on RareConnect as moderators. The site is available in 12 languages and although it was initiated in Germany, it’s international and a safe place to be. We are looking forward to welcome ARVC patients from other countries!
If you are looking for a specific question in the forum, which may have been asked there before, you can enter a term in the search function (“Search within the community”) for example “heat”, then you will be asked all previous posts that deal with the topic “heat”).
We represent the interests of ARVC patients and relatives on 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.
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 thematic 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 institustions, associatons and societies (Download PDF)
> Memories of personalities with ARVC
If you have any questions, please don´t hesitate to write an E-Mail to our chair Ruth Biller firstname.lastname@example.org