FOP Registry First Annual Report
The IFOPA is very pleased to share with you the first annual report to participants from the FOP Registry
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.
Physical Freedom Festival Raises Money for IFOPA
Thank you to the Pullano family for hosting an incredibly successful Physical Freedom Festival in Middletown, CT
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
IFOPA to Host Midwest Family Gathering
Forging Our Path: Connecting Patients, Clinicians and Families
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.”
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.
