IFOPA

Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.

[IFOPA @ifopa]

👋 Meet Sue Kahn, Vice Chair of the IFOPA Board of Directors!

Sue (@SusanRKahn) brings decades of rare disease experience from both the pharmaceutical industry (Genzyme) and patient advocacy leadership.

She shares what she's most proud of in IFOPA's work, what gives her hope for FOP treatment, and a surprising talent—ice skating while playing the tenor saxophone! 🎷⛸️✨

📌 Watch now: https://t.co/YgSPCq9QDm

All year long, we'll introduce you to our Board of Directors so you can get to know the people working tirelessly behind the scenes to support our community 💙 #FOPCommunity #NonprofitLeaders

[IFOPA @ifopa]

👉 Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Tuesday, August 18 at ⏰ 6 PM EDT

Please note: Our August Peer Support Group for Adults with FOP will meet in the evening. The Peer Support Group will return to Noon EDT/18:00 CEST in September.

A chance to connect and share facilitated by Dr. Al Freedman (@amf41), a psychologist & rare disease parent.

🔗 Register: https://t.co/G28ryj8T1E

Participants should be comfortable speaking and understanding English. #FOPawareness #RareDisease

[IFOPA @ifopa]

🧡 Caring for someone with FOP is a unique journey—you don’t have to do it alone.

Join our Caregiver Support Group on August 18, 2026 from 12–1 PM EDT / 18:00–19:00 CEST to connect, share, and support one another.

🧬 Led by psychologist Dr. Al Freedman (@amf41)

🔗 https://t.co/XaVEQl2ijd #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

[IFOPA @ifopa]

The Harold & Elaine Kaplan Quality of L.I.F.E. Awards CLOSE on July 31! 🎉

If you've been thinking about that 🛁 shower chair, 🚽 bathroom upgrade, or 💡 accessibility modification that would make your life with FOP easier, now's your chance to make it happen.

The details:
💙 Up to $1,800 grant
🌍 Anyone with FOP, anywhere in the world
📝 Applications open July 1–31
💰 Applications will be awarded based on available funds
✨ Recipients notified in August 2026

📌 Learn more: https://t.co/0RPF2M5TSO

Questions? Contact Melissa Davis, OTR/L, at [email protected] or [phone]. #IndependenceEveryDay #QualityofLIFEawards

[IFOPA @ifopa]

Last Call to Register! Research Fireside Chat with Dr. David Goldhamer ⏰🔬💙

This is a fantastic opportunity to hear directly from a researcher and ask your own questions. Don't miss your chance to join!

📅 Tuesday, July 28, 2026
⏰ 12:00 PM EDT / 18:00 CEST

Moderated by IFOPA Research Director Mark Hamilton, PhD, this informal conversation is a great way to hear the science in plain language. 🎙️

👉 Register now before it's too late: https://t.co/CCVeC2hnWI #FOPResearch #ACTFORFOP

[IFOPA @ifopa]

One Week Away! Research Fireside Chat with Dr. David Goldhamer 🔬💙

Learn how his ACT for FOP grant is exploring whether stem cells are malfunctioning or receiving wrong signals during flare-ups, driving bone formation in FOP.

📅 July 28 | 12 PM EDT / 18:00 CEST

Register & submit questions: https://t.co/CCVeC2hnWI #FOPResearch #ACTFORFOP

[IFOPA @ifopa]

📌 FINAL Reminder: FOP Caregiver Support Group – Tuesday, July 21, at 12 PM EDT / 18:00 CEST

Caring for someone with FOP is a journey filled with love, challenges, and strength. You deserve a community that gets it.

Led by Dr. Al Freedman (@amf41)

👉 Register: https://t.co/gINePtVVjO #FOPawareness #RareDisease

[IFOPA @ifopa]

Joe Hollywood, who lives with FOP, spent part of his time at the 2025 Family Gathering collecting video interviews and footage for a class project. Joe is currently studying film and media at Raritan Valley Community College (@raritanvalleycc), and he turned that footage into a mini-documentary about the Gathering. What a unique way to raise awareness of FOP! 🎬✨

👉 Check out "Behind the Scenes at the FOP Family Gathering": https://t.co/WmWKMKic1j #FOPCommunity #FOPawareness

[IFOPA @ifopa]

Turn Your Car Into Hope 🚗💙

For FOP community member Megan Olsen, mom to Hayden who lived with FOP, donating her old car to the IFOPA just made sense. After years of use, her station wagon sat idle—so she reached out to Cars2CureFOP, a donation program that funds research and supports the FOP community.

"It was super easy," she remembers. "I called them up, they organized a tow truck to pick it up, it went to auction, and I received the tax deduction receipt."

👉 Read Megan's full story: https://t.co/mWFJUPNge6

Have a vehicle you no longer need? Donate it through Cars2CureFOP by calling 855-500-RIDE (7433) or visiting the link below. Free pick-up within 72 hours! 🚗👉 https://t.co/9RwSdC30zS

❤️ @HaydensHope4FOP #cureFOP #VehicleDonation

[IFOPA @ifopa]

New Resource: Understanding FOP's Impact on Hearing, Speech & Swallowing 💙

Families navigating FOP often have questions about how the condition can affect hearing, speech, swallowing, and other ear, nose, and throat (ENT) functions.

This easy-to-navigate resource explains how these systems may be affected by FOP and highlights the key specialists who can support a comprehensive, multidisciplinary care team. 🩺✨

A downloadable PDF version is also available, so you can save, print, or share it with your care team.

👉 Explore and bookmark this valuable new resource: https://t.co/UMEuQD34Es #FOPresources #FOPcare

[IFOPA @ifopa]

🚨 LAST CALL: Closes 11:59pm EDT tonight!
US Community: Your Voice Is Needed Urgently 💙
A proposed federal rule could limit international research collaboration, replace peer review with political approval, and restrict FOP research funding.
Comment period open through July 13.
Learn more & take action: https://t.co/Gehzydmgun #RareDisease #FOPResearch

[IFOPA @ifopa]

‼️ DATE CHANGE: Join our July Bereaved Families Virtual Meeting on Thursday, July 16, at 8 pm ET 💙

A virtual space for those who’ve lost loved ones to FOP to support one another.

🔗 Register: https://t.co/lnhCkjvyko

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

Palovarotene (Sohonos) Now Available for Sale in Japan 🎉

We are pleased to share that palovarotene capsules (Sohonos) are now available for sale in 🇯🇵 Japan as of July 7, following approval earlier this year for the treatment of FOP. A Japanese health ministry panel recommended approval in January 2026, following clinical trials that showed no specific dose adjustments are needed for Japanese patients.

👉 What this means: Palovarotene is a selective retinoic acid receptor gamma (RARγ) agonist designed to help reduce abnormal bone formation in FOP. It was previously approved in 🇨🇦 Canada, 🇺🇸 the United States, 🇦🇺 Australia, and 🇷🇺 Russia (and provisionally approved in the 🇦🇪 United Arab Emirates), and now families in Japan have access to this treatment option.

✨ This is an important milestone for the FOP community worldwide, and we're celebrating this progress with our friends and families in Japan! 🙌

[IFOPA @ifopa]

US Community: Your Voice Is Needed Urgently 💙
A proposed federal rule could limit international research collaboration, replace peer review with political approval, and restrict FOP research funding.
Comment period open through July 13.
Learn more & take action: https://t.co/Gehzydmgun #FOPResearch #RareDisease

[IFOPA @ifopa]

Research Fireside Chat: Dr. David Goldhamer 🔬💙
Learn how his ACT for FOP grant is exploring whether stem cells are malfunctioning or receiving wrong signals during flare-ups, driving bone formation in FOP.

📅 July 28 | 12 PM EDT / 18:00 CEST

Register & submit questions: https://t.co/CCVeC2hnWI #FOPResearch #ACTFORFOP

[IFOPA @ifopa]

👉 Final Reminder: Join our July Bereaved Families Virtual Meeting on Thursday, July 9, at 8 pm ET 💙

Led by bereaved FOP mom Marilyn Hair (@marhair), the group is an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other 🕯️

🔗 Register: https://t.co/lnhCkjvyko

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

👉 Final Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Tuesday, July 7 | ⏰ 12 PM EDT / 18:00 CEST

A chance to connect and share facilitated by Dr. Al Freedman (@amf41), a psychologist & rare disease parent.

🔗 Register: https://t.co/7rCOeljQH7

Participants should be comfortable speaking and understanding English.
#FOPawareness #RareDisease

[IFOPA @ifopa]

Have you read the 2026 ICC Editorial on FOP Clinical Trials? 💙

The International Clinical Council on FOP (ICC)—an independent group of internationally recognized clinical experts established in 2017—works to share best practices in FOP care and research and is available for consultation worldwide.

In 2020, the ICC issued an editorial on FOP clinical trials. At that time, there were just two Phase 2 FOP clinical trials underway. Since then, the FOP community has seen five additional Phase 2 and 3 clinical trials launch and multiple drugs in regulatory review—a sign of significant progress in the search for treatments.

Given this rapid evolution, the ICC released an updated editorial in February that reflects on the current clinical trial landscape and offers guidance for the FOP community.

We're grateful to the ICC for the time and expertise they dedicate to educating and supporting our community throughout the clinical trial journey. 🙏

👉 Read the full editorial: https://t.co/39Vtvv4GT7 #cureFOP #clinicaltrials

[IFOPA @ifopa]

July is Disability Pride Month 💙

What does disability pride mean to you? Tell us in ONE word 👇 #disabilitypridemonth #disabilitypride #FOPawareness

[IFOPA @ifopa]

🧡 Caring for someone with FOP is a unique journey—you don’t have to do it alone.

Join our Caregiver Support Group on July, 21 from 12–1 PM EDT / 18:00–19:00 CEST to connect, share, and support one another.

🧬 Led by psychologist Dr. Al Freedman (@amf41)

🔗 https://t.co/gINePtVVjO #FOPawareness #RareDisease