English – ARVC-Selbsthilfe

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 organise regular meetings with lectures, and are constantly developing our activities. Since October 2018 we have been a registered association (ARVC-Selbsthilfe e.V.) based in Munich – Germany.

Please read our leaflet for more information on our patient association and on ARVC.
> Leaflet in English – Online 2021 (PDF)

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 e.V., BVHK e.V., Herz-ohne-Stress)
– Networking on international level (ERN GUARD-Heart, Cardiomyopathy UK, Global Heart Hub, SADS)

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

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

In her speech “I Have A Dream”, Ruth Biller, chairperson of the ARVC Selbsthilfe e.V., talks about goals and wishes for the diagnosis and treatment of rare heart diseases from her perspective as a patient advocate for the European Reference Network (ERN) GUARD-Heart. This speech was recorded for the 9th Spanish Cardiogenetics Day (IX Jornada de Cardiogenética), which was held online on the 27th of November 2020.

ARVC patient community on RareConnect

RareConnect is an online patient platform set up by the European patient organisation 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 organisation).

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 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.

> Website of ERN GUARD-Heart
> Information on European Patient Advocacy Groups (ePAG)
> List of European Reference Networks (ERN)

Articles

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.

> Complete list of articles, Download (Excel-List)

Patient survey on patient needs

Title:
Needs of patients and relatives when receiving the diagnosis

Duration:
– start: 18.12.2019 – 29.02.2020
– ongoing

Content:
We would like 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.
> Survey on patients needs – results

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 is to be set up to develop guidelines for the care of patients with genetic heart diseases.

Survey on ARVC and pregnancy

> Questionnaire on pregnancy with ARVC

Contact

If you have any questions, please don’t hesitate to contact our chair Ruth Biller via email at ruth.biller@arvc-selbsthilfe.org

ARVC patient association for Germany, Austria and Switzerland