Welkom! 👋
Contactgroep Marfan en aanverwante aandoeningen Nederland is a national patient organization for people living with Marfan syndrome and related conditions since 1982. The organization provides information and support to patients and their families, promotes peer support, and facilitates the exchange of knowledge and experiences about living with these conditions.
The Contactgroep works to raise awareness and improve recognition of Marfan syndrome and related conditions, with the aim of supporting early diagnosis and appropriate medical care. It also informs members about developments in healthcare and their rights as patients.
The organization collaborates with healthcare professionals and the six specialized Marfan hospitals throughout the Netherlands and promotes good cooperation between patients, families, and healthcare providers.
Meetups
Each year, the Contactgroep organizes meetings, including a national “Voorjaarscontactdag”, featuring medical presentations, information sessions, and opportunities for patients and their families to meet, connect, and share experiences.
Apart from that, the Contactgroep also organizes activities for youth, young adults, women, men and families each year.
(Picture down below: Familyday 2025)