Annual events organized by the foundation:
A family day:
This is a day where families meet and share experiences in a relaxed atmosphere.
A scientific symposium:
Families, contributors and stakeholders are informed about recent developments in medical research and trials. Social issues are high on the agenda.
The foundation also participates in fundraising activities, such as the Damloop, in support of research.
Communication & information:
The foundation is exploring effective communication channels to share information and education with the FOP community. The use of social media is explored vigorously, while seeking to optimize
the website format of the Dutch FOP Foundation.
The executive board provides day-to-day leadership for the foundation, supported by APN administrative office at Tiel, NL.
Composition as of 1 January 2018:
Chairman: Ms. Drs. E.C.M (Elinor) Bouvy-Berends
Vice-chairman: Ms. M. (Mireille) Goudzwaard-Niepce
1st Secretary: Ms. J. (Janine) Schroots-Niepce
2nd Secretary: Ms. S.M.D. (Sandra) Otten-Otsen
Treasurer: Mr. P.T.N. (Peter) Philips
Board Member: Em. Prof. J.C.N (Coen) Netelenbos
Medical Research Focus Area
Board Member: Mr. L.P. (Luc Pascal) Schroots
IT & Social Media Focus Area