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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Lincoln's Legacy

In honor of ten-year-old Lincoln Wheelock, the 7th Annual Lincoln’s Legacy Run was held October 16, in Des Moines, Iowa 

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IFOPA Supports Fundraisers with Experienced Staff and New Digital Resources

“In Honor Of” fundraising increases impact of grassroots campaigns

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IFOPA Welcomes DDF Attendees

Second Drug Development Forum 

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FOP Drug Development Forum Returns in 2016

Connecting researchers to advance therapy and drug development for FOP

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FOP Registry First Annual Report

The IFOPA is very pleased to share with you the first annual report to participants from the FOP 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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IFOPA to Host Midwest Family Gathering

Forging Our Path: Connecting Patients, Clinicians and Families 


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