Rebecca and Kyle Love their “One Rare Boy”

One Family’s FOP Journey and How They’re Raising Awareness—and Raising Funds

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Prep Now for Next School Year

Specialized School Plan Tips Shared by Rory Otto

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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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Two Important Ways You Can Be Part of Rare Disease Day on Feb. 28

Easy ideas for getting involved

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Bingo for a Cure!

Chrissy Flexer Explains the History and Heart of Bingo for a Cure!

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Contribute to the new IFOPA Pinterest Boards

Share your ideas

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Erin Got Her Wish ... And Got Her Wheels!

Putting a disabled teen in the driver's seat

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IFOPA Welcomes New Board Members

We appreciate their involvement

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Focus on Fundraising

March is filled with important fundraising events

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