IFOPA Board Member, Gary McGuire, and his daughter, Natalie, recently visited Dr. Ben Levi at his lab to discuss the FOP research being performed at the University of Michigan.

An important announcement from Clementia

An important announcement from Clementia

The IFOPA is pleased to share this announcement from Clementia Pharmaceuticals: Top-line Results from Phase 2 Trial of Palovarotene for Treatment of Patients with FOP. Read more.

The National Organization for Rare Disorders (NORD) named Dr. Fred Kaplan among its 2017 honorees.

Read more.

Potentially Promising Treatment for FOP

We are pleased to share a few exciting updates on our ongoing work to help improve the lives of people with FOP. 

21st Century Cures Legislation Signed by President Obama

On December 7, the Senate followed the House of Representative's lead and signed the 21^st Century Cures bill which is focused on developing treatments and cures for rare diseases; President Obama signed it on December 13. 

Approval of 3 New Sites!

The participation of individuals living with FOP in clinical studies and trials is key to FOP drug development efforts. 

Phase 2 Trial Webinar

We hope you’ll join us Wednesday, Nov. 30, 2016, 11 am to noon Eastern Time, for an important webinar presented by Clementia on the top-line results from the phase 2 trial of palovarotene for treatment of patients with fibrodysplasia ossificans progressiva. 

Please read Clementia's Clinical Program Announcement: Opportunity for New Adult and Older Adolescent Subjects to Enroll in Palovarotene Study. Click here. 

The International FOP Association is pleased to share the following news from Regeneron Pharmaceuticals

Regeneron is pleased to inform you that anti-Activin A antibody, REGN2477, is now in a clinical trial.