News

FOP Drug Development Forum Returns in 2016

Connecting researchers to advance therapy and drug development for FOP

Read more Share

FOP Registry First Annual Report

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

Read more Share

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.

Read more Share

Physical Freedom Festival Raises Money for IFOPA

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

Read more Share

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

Read more Share

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.”

Read more Share

IFOPA to Host Midwest Family Gathering

Forging Our Path: Connecting Patients, Clinicians and Families 

Save

Read more Share

Letter Writing Campaign in honor of Natalie

Effective grassroots fundraising

Read more Share

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. 

Share

Celebrating One Year of Making a Difference

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

Read more Share

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter