News

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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Exciting Changes for 2017

Growing our ability to deliver on the IFOPA's mission

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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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First Ever Regional Gathering Draws FOP Community to St. Louis

The weekend of November 4, 2016, found members of the FOP community gathered in St. Louis, Missouri

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2016 Competitive Research Grant Program Winners Announced

The IFOPA is pleased to announce the three recipients of nearly $108,000 in research grants through its Competitive Research Grants (CRG) Program

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Remember the IFOPA During the Holidays

This holiday season, it’s easier than ever to give back

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IFOPA Hosts Drug Development Forum

The IFOPA hosted the second Drug Development Forum Oct. 24 to 25 in Boston, Massachusetts

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Talbots Fundraiser for FOP

Talbots patrons got a jump start on their holiday shopping – all to benefit The IFOPA! 

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Team Addgene Runs Superhero 5K

Thank you to team Addgene who ran the Superhero 5K in Cambridge, Massachusetts in honor of AJ! 

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Registry Will Soon Be Translated into Six Languages

Meeting the needs of the global FOP community

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