Association

Our association is a national patient organization founded in April 1992. Our association has 199 members (16.2.2026).

We became a member of the Finnish Association of People with Physical Disabilities. The most visible part of our membership is our activities in the Harvinaiset group. The association is also a member of HARSO ry.

The association’s goals include:

• to share information about neurofibromatosis with anyone who needs it, such as NF patients and their families or social and educational care personnel.
• to organize opportunities for NF patients and their families to meet and support each other
• to develop monitoring systems
• to create international contacts with patient associations in other countries
• to strive to promote medical research on neurofibromatosis

The association organizes peer meetings, cruises and subsidized holidays for its members together with MTLH. In addition, the association sends a membership letter to its members a few times a year.

Board members 2025