ARVC-Selbsthilfe e.V. (ARVC patient advocacy group)

Munich, Germany

Ruth Biller

Our activities

  • Organizing lectures with ARVC specialists for patients
  • Group meetings for the exchange of information and experiences
  • Providing access to information, therapies, state of the art in research on ARVC through our website arvc-selbsthilfe.org
  • Personal counselling for ARVC patients
  • Support in urgent crisis situations
  • Regional and transregional networking with ARVC specialists and research institutions
  • Participation in specialist lectures and congresses

 

Our aims

  • Sharing experiences and knowledge
  • Improving access to adequate diagnosis and treatment of ARVC
  • Improving high quality healthcare for ARVC patients
  • Providing psychological support of ARVC patients
  • Increasing public awareness of the disease
  • Encouraging the development of new therapies
  • Intensifying research and support research projects
  • Preventing sudden cardiac death

 

ARVC-Selbsthilfe was founded in 2013 as a self-help group with originally 25 members, now having more than 100 members. Since 2015, we organize at least one group meeting per year in the Greater Munich area with a lecture of an ARVC specialist and group meetings afterwards. We registered our non-profit-association „ARVC-Selbsthilfe e.V.“ in 2018 with 50 registered members, enlarging our sphere of influence. Furthermore, we visit regularly patient days for rare diseases and congresses, contacting ARVC specialists from different German clinics. We are organising currently a one-day ARVC symposium for patients and cardiologists, taking place 23rd of February 2019.

We are in frequent contact with Prof. Dr. Eric Schulze-Bahr, who is the German member of ERN Guard Heart.