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.
Together with other ARVC patients and relatives, we founded the ARVC Self Help Group (ARVC-Selbsthilfe) in summer 2013. Since October 2018 we have been a registered non-profit patient association (ARVC-Selbsthilfe e.V.) based in Munich – Germany.
Please read our leaflet for more information on our patient association and on ARVC.
ARVC-Selbsthilfe Leaflet Online (English)
Our activities
- Organizing lectures with ARVC specialists for patients
- Face-to-face meetups for the exchange of information and experiences
- Online activities (lectures, Q&A sessions, patient meetings)
- Providing access to information, therapies, state of the art in research on ARVC through our website, our newsletter and social media
- Personal counselling for ARVC patients
- Support in urgent crisis situations
- Regional and cross-regional networking with ARVC specialists and research institutions
- Participation in specialist lectures and congresses
- Networking on national level (ACHSE, BVHK, Herz-ohne-Stress, SADS Deutschland )
- Networking on international level (ERN GUARD-Heart, Cardiomyopathy UK, Global Heart Hub, SADS Foundation)
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 the public awareness of the disease
- Encouraging the development of new therapies
- Intensifying research and support research projects
- Preventing sudden cardiac death
New initiatives and aims since 2020
- PhD scholarship for medical students doing research on ARVC
- Integration of German ARVC patients into European / international registries
- Initiative for the coverage of molecular autopsy by the health insurance companies
- Establishing a psychosocial network and psychological support for ARVC patients
- Participation in a Cross ERN working group on pregnancy and family planning with rare diseases
- Co-organising a PROMS (patient reported outcome measures) workshop for ERN GUARD-Heart (> Workshop)
- Establish PROMs in the care of patients with ARVC and rare heart diseases
Our Scientific Advisory Board and Expert Network
ARVC-Selbsthilfe e.V. works with German experts from different disciplines.
At European level, Ruth Biller maintains contacts with European experts from many different countries through her work in the European patient advocacy group of ERN GUARD-Heart.
> Scientific Advisory Board
> ERN GUARD-Heart members
European Patient Advocacy Group
We represent the interests of ARVC patients and relatives on a European level. In November 2018 we were the first approved German member of the European Patient Advocacy Group (ePAG) of the ERN GUARD-Heart, the European Reference Network – Gateway to Uncommon And Rare Diseases of the Heart.
Since August 2019 our chair Ruth Biller is chair of the European patient advocacy group and represents the inherited (genetic) heart diseases in general.
> Website of ERN GUARD-Heart
> Information on European Patient Advocacy Groups (ePAG)
> List of European Reference Networks (ERN)
> Podcast with European Patient Advocates Ruth Biller and Carola Ossenkopp (2024)
International Awareness
At international level, Ruth Biller is very active in raising awareness for ARVC, genetic/inherited heart diseases and sudden cardiac death.
> Interview des ESC Council of Cardiovascular Genomics (Antoine Bondue, Eloisa Arbustini, Stephanie Oates and Ruth Biller)
> Global Heart Hub Cardiomyopathy Awareness Campaign (Ruth´s story)
Articles and studies
You’ll find many interesting articles and brochures for patients on our website. You can download the lists of articles with English (and German) titles and links for each topic area.
Articles on ARVC (Excel-File)
Brochures for patients
Articles on ARVC in general
Articles on the diagnosis and differential diagnosis of ARVC
Articles on genetics in ARVC
Articles on therapy of ARVC
Article on ICD and Devices
Articles on psychosocial topics
Articles on ARVC and sports/exercise
Articles on pregnancy with ARVC and preimplantation diagnosis (PGD)
Articles on children and adolescents with ARVC
Articles on sudden cardiac death and arrhythmia
Articles on ARVC basic research
Guidelines relevant for ARVC
Articles on other topics relevant for ARVC
Important institutions
Patient registries
Patient survey on patient needs
Title:
Needs of patients and relatives when receiving the diagnosis
Duration:
- start: first round 18.12.2019 – 29.02.2020
- ongoing
Aim:
We wanted to find out what the needs are from the patient’s and relatives’ perspective when confronted with the diagnosis of ARVC.
Results:
The evaluation so far shows: The central issue is the difficult communication between cardiologists and patients. While the patients’ need for information often goes in the psychosocial direction (effects on everyday life, life expectancy, effects on the professional situation, financial questions, what is good for me, what should I avoid etc.), cardiologists often communicate purely on a professional/medical level. As an patient association we try to close the existing gap as best we can.
It is particularly striking that only 15% of patients were offered psychological support, although more than two thirds (68%) would have liked to have been offered it.
Patient survey on unmet needs after the diagnosis ARVC (EN)
Consequences:
These results were incorporated into a workshop on PROMs/PREMs (patient-related outcome/experience measures) in November 2020, in which Ruth Biller gave a lecture on patient needs in the 2nd module. At the end of the workshop, a European working group was set up to develop guidelines for the care of patients with genetic heart diseases.
Publication:
Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review
van Pottelberghe S, Kupper N, Scheirlynck E., Biller R et al. Eur J Hum Genet. 2023 Dec 14
https://doi.org/10.1038/s41431-023-01510-w
Contact
If you have any questions, please don’t hesitate to contact our chair Ruth Biller via email at ruth.biller@arvc-selbsthilfe.org
