Programs and Services

The IFOPA provides many programs and services to our members, families and community.  These are a few of those programs:

Research:

  • Funds the Center for Research in FOP and Related Disorders at the University of Pennsylvania School of Medicine with over $500,000 annually.
  • Administer instrumental scientific research studies on FOP members facing additional afflictions.

Education:
  • Provides education to the medical community on early signs of FOP

  • Develops, publicizes and distributes videos, brochures and information via IFOPA website about FOP and issues surrounding those diagnosed with FOP.

Support:
  • Produces the FOP Connection (print and electronic newsletter) for those with FOP. It features pictures and articles about members, fundraising events, donor acknowledgement, research developments, and suggestions and resources for living with FOP
  • Provides an online member forum for discussion, support and research news
  • Grants L.I.F.E (Living Independently with Full Equality) Awards to those with FOP – a program that provides funding to enable independent living to those with FOP
  • The Betty Ann Laue/IFOPA Resource Center is a central clearinghouse for information about FOP. The Resource Center offers scientific and medical articles, medical binder kits, emergency cards, interesting stories on FOP members and fundraisers, videos, and more. It is located at the IFOPA office in Florida
  • Symposia, gatherings and meetings - brings together FOP patients with health professionals who specialize in FOP.  These gatherings provide a unique opportunity for FOP patients to gather in a collaborative forum to discuss FOP research, exchange information and experiences, share coping strategies, and much more
  • Traveling Resource Center (TRC) - designed to provide the global FOP community with a traveling showcase of tools and gadgets available for use in everyday living
  • Mentoring - designed to provide members of the FOP community the opportunity of having a mentor as a means to better guide him or her through the challenges of FOP
  • E-Learning Events - aims to provide and share information among members about overcoming and integrating common obstacles and everyday situations through video seminars and other web-enhanced communication methods
  • PrayforFOPHealing is an online group that gives IFOPA members an opportunity to share prayer requests, inspirational quotes and poems and talk about how faith sustains them

Advocacy:
  • Participates as an active member of the Rare Bone Disease Network under the US Bone and Joint Decade to advocate for increased funding for rare and neglected diseases