ARVC-Selbsthilfe e.V.

ARVC-Selbsthilfe e.V. is a patient organization dedicated to supporting individuals and families affected by Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) and related conditions. Established in 2013 and officially registered as a non-profit association in 2018, the organization is headquartered in Munich, Germany. It operates as a self-help group, providing a platform for patients and their families to connect, share experiences, and access vital information about ARVC.

The primary mission of ARVC-Selbsthilfe e.V. is to improve the quality of life for individuals diagnosed with ARVC and their families. The organization aims to enhance access to accurate diagnosis and effective treatment, provide psychological support, and raise public awareness about the disease. Additionally, it seeks to encourage the development of new therapies and support research initiatives to prevent sudden cardiac death associated with ARVC.

ARVC-Selbsthilfe e.V. specifically supports patients diagnosed with Arrhythmogenic Cardiomyopathy (ACM), including Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), Arrhythmogenic Left Ventricular Cardiomyopathy (ALVC), and related conditions such as Arrhythmogenic Ventricular Cardiomyopathy (AVC) and Arrhythmogenic Right Ventricular Dysplasia (ARVD).

The organization engages in a variety of activities to support its mission, including:

• Organizing lectures and Q&A sessions with ARVC specialists for patients and families.
• Facilitating face-to-face and online meetups for information exchange and support.
• Providing access to up-to-date information on ARVC through its website, newsletters, and social media.
• Offering personal counseling and support in crisis situations.
• Networking with ARVC specialists and research institutions at national and international levels.

ARVC-Selbsthilfe e.V. offers various forms of support to patients and their families, including:

• Information hotlines and consultations to address patient queries and concerns.
• Educational materials and workshops to enhance understanding of ARVC.
• Psychological support services to help patients cope with the emotional impact of the disease.
• Networking opportunities to connect with other patients and experts in the field.

Since its inception, ARVC-Selbsthilfe e.V. has made significant strides in advocating for ARVC patients. The organization has successfully integrated German patients into European and international registries, initiated a PhD scholarship for research on ARVC, and participated in the development of patient-reported outcome measures (PROMs) for rare heart diseases. These efforts have contributed to a better understanding of ARVC and improved patient care.