This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
Sign up to Share Your FOP Story
You won't want to miss the 2017 FOP Family Gathering, Dec. 1-3, in San Francisco, California. This event
is an exciting opportunity to learn from FOP experts and one another, reconnect with old friends, and develop new relationships.
The FOP Family Gathering is also a great place to share your FOP story.
Writers and a video team will be on hand to get your story so they can create articles for future IFOPA newsletters, e-newsletters, videos, and our social channels. Learn more and sign up >
A trip to San Francisco not in your future? That's ok! You can always share your story online.
The 2017 FOP Lab Tour - Part 2
FOP Research Development and Partnerships Director, Adam Sherman, shares about the recent trip he and Michelle Davis, IFOPA Executive Director, made to UPENN to visit Drs. Kaplan and Shore and the FOP Center for Research in FOP and Related Disorders. The trip included several special stops and lectures that were especially insightful for Adam.
IFOPA Names Program Manager Serving Patients and Families
On October 23, Anitha Devadason joined the IFOPA as the Program Manager serving patients and families.
Anitha's work will help the IFOPA broaden its reach and deliver a wider range of programs and services to FOP families. Meet Anitha and also learn about the IFOPA's new Family Services Committee, as well as an expanded team of FOP community mentors, all working together to develop, deliver and evaluate programs and services.
Have Faith on the Journey
Whitney Leckenby shares the story of her diagnosis and how she and her family are navigating the FOP experience.
Learn how FOP patients and families around the globe are learning from FOP experts and connecting with one another. We are grateful for international FOP leaders who are making these meetings possible.
With so much activity in the world of FOP research and programs and services, we want to ensure that the community hears the most up-to-date information about FOP and the IFOPA, and clarify when information is misleading or confusing. Sometimes, there is information it would be helpful for the FOP community to know that just isn't being widely distributed.
So we're making a point to address these communication challenges using the special "Did You Know?" image above.
Learn more >
