IFOPA News

FOP Connection Registry First Annual Report

The IFOPA is very pleased to share with you the first annual report to participants from the FOP Connection Registry

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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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Physical Freedom Festival Raises Money for IFOPA

Thank you to the Pullano family for hosting an incredibly successful Physical Freedom Festival in Middletown, CT 

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IFOPA Leadership Develops Guidelines for Engaging Pharmaceutical Companies

New document is intended to define a preferred partnership approach and ensure IFOPA’s independence as a patient organization

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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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IFOPA to Host Midwest Family Gathering

Forging Our Path: Connecting Patients, Clinicians and Families 

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Letter Writing Campaign in honor of Natalie

Effective grassroots fundraising

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Celebrating One Year of Making a Difference

The FOP Connection Registry is celebrating one year of making a difference today!

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IFOPA's Support of Clinical Trials

A Message about the IFOPA's Support for Clinical Trials

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An Update on FOP Drug Development: News from the FOP Italia Annual Meeting

Summary from the IFOPA Research Committee

The FOP research landscape is evolving at a rapid pace in many wonderful ways. Global efforts to develop therapies for FOP are stronger than ever among academic and biopharmaceutical teams. The IFOPA works continuously to monitor and support these efforts, serve as an advocate for the FOP community, and inform you of progress whenever possible.

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