@cure_fop

@cure_fop has been a member of Linktree for 4 years and joined in September 2021. The social media accounts linked to from @cure_fop are: • Facebook • Instagram • YouTube • LinkedIn • X Besides social media accounts, ifopa has populated their site with: • Navigating Kindergarten with FOP • The Quality of L.I.F.E. Award • Turn your car into hope: One mother’s story behind her vehicle donation - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • New Resource: Understanding FOP's Impact on Hearing, Speech & Swallowing • Meet Tiffanie Williams | IFOPA Board of Directors • Register: August 18 Caregiver Support Group • Register: August 18 Peer Support Group • US ADVOCACY ALERT: Comment by 7/13 to Protect FOP Research • IFOPA Research Fireside Chat with Dr. Juli Simon | March 2026 • International Clinical Council on FOP Releases Updated Editorial on Clinical Trials for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Lymphatic Drainage Resources • SURVEY: Share your experience with early clinical trial stoppage • Meet Nadine Groẞmann | IFOPA Board Chair • Register: June 16 Gaming and FOP | Advocacy Series Webinar • Register: June 18 Caregiver Support Group • Register: June 8 Peer Support Group for Adults with FOP • Episode 11: The Reveal | Journey to Discovery • Register: May 28 FOP Bereaved Families Virtual Meeting • Episode 9: The Collaboration | Journey to Discovery: A Breakthrough Built on Hope • Register: May 12 Peer Support Group for Adults with FOP • Register: May 19 Caregiver Support Group • Episode 7: The Determination | Journey to Discovery • Episode 6: The Connections | Journey to Discovery • IFOPA Ability Toolbox Homemade Tool Contest • Episode 5: The Technique | Journey to Discovery • Episode 4: The Chance Encounter | Journey to Discovery • Episode 3: The Catalyst | Journey to Discovery • Episode 2: The Question | Journey to Discovery • Episode 1: The Unknown | Journey to Discovery • Register: April 21 Caregiver Support Group • Back to School Resources - Changing Faces Campaign • Isla’s journey with FOP - Changing Faces Campaign • Navigating Kindergarten • FOP Physical and Occupational Therapy Guide • FOP and School Resources • Donate to Join the Pursuit of a Cure | 100% of Funds Go Directly to Research • Earn CMEs: Navigating the Challenges of Managing HO • Plan Now, Make an Impact Later - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Episode 12: The Impact | Journey to Discovery • Episode 10: The Double Peaks | Journey to Discovery • Episode 8: The Present Meets the Past | Journey to Discovery: A Breakthrough Built on Hope • Visit the IFOPA Website • Watch: Navigating Immunizations and FOP • Two FOP Trials Share Results at Endocrine Society 2026 Meeting - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Listen: Strengthening Your Support Network • Important Announcements about Zilurgisertib Clinical Trial - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Regeneron to Highlight Progress Across Its Metabolic Disease, Ophthalmology and Rare Disease Pipelines at ADA and ENDO | Regeneron Pharmaceuticals Inc. • Mirum Pharmaceuticals and Incyte Announce Pivotal Late-Breaking Results for Zilurgisertib in Fibrodysplasia Ossificans Progressiva Accepted for Presentation at ENDO 2026 • IFOPA Community Voices: "I didn't think we would be that one in a million" • Dr. Hsiao Research Study: Anti-IL1 Medications for FOP 🧬 and more • Meet Charles Hunsaker | IFOPA's Philanthropy Manager • Consider Rare: Suspecting and Diagnosing Fibrodysplasia Ossificans Progressiva (FOP) • Help us Invite Your Local Doctor to Our FOP Community • EveryLife Foundation for Rare Diseases | Action Center • A Historic First: China FOP Family Meeting • 2027 Family Gathering Planning Committee Interest Form • Read: March FOP Connection • Register: April Peer Support Group for Adults with FOP • IFOPA Summer Family Activity Guide • Register: April Caregiver Support Group • Recommendations for Flu Season • ANDECAL Trial Now Enrolling Children 12 and Up and Adults at UPenn • Healthy Smile Loading: Dental and Oral Health Resources from the IFOPA • Register for the Driving and FOP Webinar • Take the Global Patient Insights Survey by March 31 • Urgent Action Required: Federal Funding Pause Threatens Caregiver Services | Caregiver Nation Network • Register: July 7 Peer Support Group • Register: July FOP Bereaved Families Virtual Meeting • Register: July 21 Caregiver Support Group • Register: July 26 Passion & Purpose In Daily Life | Advocacy Series Webinar • Register: July 28 Research Fireside Chat with Dr. David Goldhamer • Garetosmab Biologics License Application Accepted by U.S. FDA • Resource: Talking to Kids About Clinical Trial Closure • FALKON Trial Closing (December 19, 2025) • Preliminary Results: OPTIMA Trial (September 17, 2025) • Clinical Trials Locations Map • FAQs: Drug Development & Clinical Trials • Watch: Patient Perspectives on Clinical Trial Participation • Watch: Living Better with FOP from Medlive • NEW and Improved FOP Oral Health Hub • Wheelchair Safety and FOP • Watch: Introduction to Using the FOP Treatment Guidelines • ICC Statement on Off-Label Treatments (Updated) • Explaining FOP to Children • ICC's FOP Medical Guidelines Published in JBMRPlus • Ability Toolbox Online Guidebook • Become a Monthly Donor • Donate Your Unwanted Vehicle • Fundraising Ideas