The Dutch Fibrodysplasia Ossificans Progressiva Foundation is a patient association of and for people with the ultra-rare disease Fibrodysplasia Ossificans Progressiva, or F-O-P in short. The Dutch FOP Foundation was founded on 20 September 2004 by Irene Snijder with as its primary objective: support people with FOP and those directly involved. Advocacy, information and peer support are major spearheads of this organization run exclusively by volunteers. Additionally, the foundation facilitates activities to promote research in the Netherlands and abroad.
The Dutch FOP Foundation aims to address every aspect that may impact the Dutch FOP community. Access to excellent medical care plus the well-being of people with FOP take top priority. The focus is also on social issues: housing, education and work. The Dutch FOP Foundation aims to be a reliable source of information about the disease and its impact; for people with FOP, living independently cannot be taken for granted.
As yet, no effective treatment has been discovered. The rapid advances in clinical drug trials are followed with great interest; two clinical studies are currently underway. There is intensive communication with international FOP organizations and patient associations. The foundation considers it her mission to provide detailed information to the relatively small patient population in the Netherlands about recent developments in medical research and clinical trials.