FOP News

Clementia Announces Preliminary Results of its Phase 2 Trial in Treatment of FOP

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.


Dr. Fred Kaplan To Receive NORD's Rare Impact Award

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

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Regeneron Shares Updates on its Ongoing FOP Research Program

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. 

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Bipartisan Support

21st Century Cures Legislation Signed by President Obama

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

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Three new Clementia sites now open for Part B of the Phase 2 Open-label Extension Trial

Approval of 3 New Sites!

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

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Join the IFOPA and Clementia for an Important Webinar

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. 

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Service Dogs—Much More Than Meets the Eye

Lori Henrotay shares advice on the service dog experience

“I would love it if everyone who has FOP would have an assistance dog by their side,” says Lori Henrotay. Her daughter Carli was diagnosed with FOP at five years old and has had service dogs since she was in the third grade.

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Yahtzee is a Good Friend

Miriam Rocke’s service dog fills several roles in her life

“He’s almost 7, but he still acts like a puppy,” says Miriam Rocke. “He does that ‘I have something in my mouth’ walk when he wants to show off.”

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Opportunity for New Patients to Enroll in Palovarotene Study

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


Regeneron's Work in FOP

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. 

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