July 2019 eNewsletter
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.
Natural History Study Data Now a Part of the FOP Registry

We are pleased to share exciting news with the FOP community regarding the Clementia, an Ipsen Company Natural History Study (NHS). 

Select data from patients who enrolled and consented in both studies has been transferred to the FOP Registry . 

Million Dollar Bike Ride Fundraising Totals Are In

The final results are in for Million Dollar Bike Ride and Team#cureFOP raised $49,601 . This means we earned the full match provided by the University of Pennsylvania's Orphan Disease Center and we have $79,601 for 2 new FOP research grants !

Thank you to Team#cureFOP 2019 and everyone who supported them!

FOP Advocates Testify at FDA Rare-Disease Listening Session

On May 29, 2019, the IFOPA organized a FOP Rare Disease-Listening Session at the U.S. Food & Drug Administration (FDA). The goal of the Listening Session was to provide FDA officials with the experiences, perspectives, needs and treatment priorities of people living with FOP . This dialogue about the patient experience was supplemented with a discussion from the IFOPA about the FOP Registry , which is an observational study collecting longitudinal medical data about FOP.

$250,000 Needed to Fund 5th ACT for FOP Grant Program

The IFOPA's ACT (Accelerating Cures & Treatments) for FOP Grant Program is getting ready to provide its 5th year of grant funding and you can be part of advancing research! The ACT for FOP program provides research funds to investigators looking to advance new treatments for FO P.

Check Out What's New at This Year's Family Gathering

The FOP Family Gathering will be here before we know it! We are excited for all of the amazing things we'll have the opportunity to do together as a community