Members

Austria’s dedicated support group for people with Marfan and related disorders. Offering information, exchange, and strong support through online and offline meetups. The Marfan Initiative Österreich has a special group for young adults.

Founded in 1999 by patients and their families, the Belgian Marfan Association (ABSM) supports people living with Marfan syndrome and their relatives.
The association provides information, support and guidance to patients and families, while raising awareness of Marfan syndrome among healthcare professionals and the wider public.
ABSM organises meetings, conferences and awareness activities to encourage exchange and connection within the Marfan community.
It works closely with healthcare professionals and specialised centres to promote appropriate and multidisciplinary care.
ABSM also supports medical research (notably with 101 Genomes Foundation) and contributes to European and international initiatives dedicated to Marfan syndrome and rare diseases.

Marfan Hilfe (Deutschland) e.V. is Germany’s only nationwide self-help organization dedicated to Marfan syndrome and related connective tissue disorders. It uniquely combines patient support with research promotion and close cooperation with specialized medical centers.

The nationwide patient advocacy group powering connections, awareness, and support for individuals and families living with Marfan syndrome and related conditions. Since 1982, CMN brings peers together, informs the public, fosters stronger medical care, and champions patients’ voices in the Netherlands and across Europe.

The Swedish Marfan Association (Svenska Marfanföreningen) is the national organization supporting people with Marfan syndrome and related conditions. It combines peer support, awareness, and health education with collaboration in research and specialist care.