Marfan Hilfe (Deutschland) e.V.
About
Marfan Hilfe (Deutschland) e.V. is Germany’s nationwide patient organization for people with Marfan syndrome and related (genetic) disorders. It brings together affected individuals, families, and professionals to provide support, share reliable information, and strengthen exchange within the community.
The organization supports people in everyday life before, during and after diagnosis, promotes networking among members, and helps improve awareness of Marfan syndrome and related conditions in Germany. A particular strength is the close connection between patient support, specialist medical care, and research.
Marfan Hilfe fulfills its mission in many ways. Examples include awareness campaigns with flyers, posters, and other printed materials; the publication of brochures and informational resources; the book “Marfan-Syndrom” published by Springer Medizin; seminars for different target groups; close cooperation with clinics and Marfan outpatient services; support for research; promotion of regional peer-to-peer activities; training for volunteers; and the operation of several websites.
Regional groups
The regional groups play a central role in the work of Marfan Hilfe. They provide local contact opportunities for people affected by Marfan syndrome and their families, and their activities include discussion meetings, lectures, shared outings, and other events that focus on exchange, information, and peer support. Because Marfan syndrome is a rare condition, the groups are organized flexibly and meet according to local demands.
Seminars and events
Marfan Hilfe organizes seminars and events for different target groups, including the annual German Marfan Day, the children’s seminar, and the teen’s seminar. These events combine information, exchange, and peer support for affected individuals and their families.
Partnerships and networks
Marfan Hilfe is actively involved in national and international networks that strengthen exchange and cooperation around Marfan syndrome and related disorders. The association is a member of the Marfan Europe Network (M.E.N.), International Federation of Marfan Support Organizations (IFMSO) and Rare Diseases Europe (EURORDIS) as well as national associations, as ACHSE and DRN Aorta.
Get in touch
Follow Marfan Hilfe (Deutschland) e.V. online:
Website: marfan.de, https://loeys-dietz-syndrom.de
Facebook: https://www.facebook.com/marfanhilfe
Instagram: https://www.instagram.com/marfanhilfe/
YouTube: https://www.youtube.com/@marfanhilfedeutschland
LinkedIn: https://de.linkedin.com/company/marfan-hilfe