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, research developments, and suggestions and resources for living with FOP
  • Provides an FOP Online member email group forum for discussion, support and research news
  • Grants L.I.F.E (Living Independently with Full Equality) Awards to its FOP members.  The program is designed to promote health, welfare and independence.  Examples of awards range from equipment, walkers, wheelchairs, adaptive bed, vehicle adaptation, tuition/registration for vocational training, specialized bicycles, comptuer hardware or assistive technology and reading aids. 
  • The Betty Anne Laue - IFOPA Resource Center is based in the IFOPA office and is not an online resource.  The Resource Center offers scientific and medical articles, interesting stories on FOP members, unique FOP-related resource materials and much more.
  • Periodic symposia, gatherings and meetings brings together FOP patients with health professionals who specialize in FOP research and care.  These gatherings provide a wonderful 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) - provides the global FOP community with a traveling showcase of tools and devices for use in daily living.  The TRC has had a presence in numerous FOP gatherings across the world. 
  • 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