IFOPA

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

[IFOPA @ifopa]

👉 Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Wednesday, November 11 | ⏰ 12 PM ET / 18:00 CET

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

🔗 Register: https://t.co/TH2n4PYiD1

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

[IFOPA @ifopa]

👉 Final Reminder: Join our October Bereaved Families Virtual Meeting on Thursday, October 22, at 8 pm ET 💙

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

🔗 Register: https://t.co/TtYJTl5T9k

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, October 20 , 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/EzdOlT6yVX #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

[IFOPA @ifopa]

A special message from our IFOPA Executive Director Michelle Davis (@MichelleDavisKC) at @ASBMR 2026 (the American Society for Bone and Mineral Research conference) 🦴 🩻 🔬 🧬 🙌 ✨

[IFOPA @ifopa]

👉 Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Tuesday, October 13 | ⏰ 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/kOxl3fNfCm

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

[IFOPA @ifopa]

Join our October Bereaved Families Virtual Meeting on Thursday, October 22, at 8 pm ET 💙

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

🔗 Register: https://t.co/TtYJTl5T9k

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

New Resources: Learn More About Atebrioz™ (zilurgisertib) 💙

Following the FDA's recent approval of Atebrioz™ (zilurgisertib) to treat FOP, Mirum Pharmaceuticals (@mirumpharma) has launched two new educational resources for the community.

👉 Visit https://t.co/3JfnAvoAs8 to learn more about Atebrioz™ and what it may mean for people living with FOP.

If you're a member of the U.S. FOP community, an adult with FOP or have a child age 12 or older, and are interested in learning more about Atebrioz™, we also encourage you to share this healthcare provider resource with your doctor:

👉 https://t.co/4wigkaGz7C

This site offers detailed clinical information to help your care team better understand this treatment option and determine whether it may be right for you. As always, treatment decisions should be made in partnership with your doctor. 🩺

📌 Learn more about the FDA approval: https://t.co/5aNHwl1xLU

[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 Tuesday, October 20 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/EzdOlT6yVX #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

[IFOPA @ifopa]

💡 Do you know what Atebrioz™ is?
It is the brand name for Mirum's (@mirumpharma) drug zilurgisertib, which was approved today in the 🇺🇸 United States.

Atebrioz is a once-daily oral ALK2 inhibitor approved to reduce the volume of total new heterotopic ossification in patients aged 12 years and older with FOP.

Atebrioz (zilurgisertib) is the third drug approved for FOP in the U.S.

As we announce this decision, we are deeply grateful to people living with FOP from around the world who participated in the Phase 2 PROGRESS trial of zilurgisertib 🙌

@Novartis originally developed zilurgisertib and then licensed it to @Incyte, which conducted the Phase 2 trial in adults and children ages 12 and up. Mirum announced they had licensed zilurgisertib in May 2026.

📌 Learn more and read Mirum’s press release: https://t.co/kYQAAjDV4m

Congratulations to the FOP community on this very special day! 💚💙 #DrugDevelopment #RareDisease

[IFOPA @ifopa]

👉 Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Tuesday, October 13 | ⏰ 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/kOxl3fNfCm

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

[IFOPA @ifopa]

A Mouse Model Moving FOP Research Forward 🐭🔬

Progress in FOP research depends on more than groundbreaking ideas; researchers need access to the tools and resources that turn those ideas into action.

Thanks to a generous sponsorship from La Jolla Pharmaceutical Company in 2018, the IFOPA created a FOP mouse model designed to recreate key features of the disease, including heterotopic bone formation and flare-ups. Unlike other models that can involve complex agreements and fees, the IFOPA's model is available to any researcher with a valid research plan, who pays only shipping costs. 🐭

Over the past eight years, this shared resource has been managed by Daniel Perrien, PhD, Associate Professor in the Division of Endocrinology at Emory University, and used across 13 labs, 4 countries, and 2 continents, contributing to 11 publications and helping secure 2 R01 and 1 R21 grants from the National Institutes of Health.

"Animal models recapitulating FOP phenotypes have been instrumental for elucidating disease mechanisms and developing therapeutic strategies," shares Dr. Jae Shim of UMass Chan Medical School, whose team has used the model to advance gene therapy research.

Your support of In Pursuit of a Cure makes this kind of progress possible, removing barriers and giving scientists around the world free access to critical research tools. 💙

💡 Read the full story: https://t.co/XZc2YAnnfl
🧬 Give to In Pursuit of a Cure today: https://t.co/JiLgH9cfjp #cureFOP #InPursuitofaCure

[IFOPA @ifopa]

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, September 15, 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/wmhWmY2RU8 #RareDisease #FOPawareness #CaregiverSupport #CaregivingHappens #caregiver

[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 September 15, 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/wmhWmY2RU8 #caregiver #CaregivingHappens #CaregiverSupport #RareDisease #FOPawareness

[IFOPA @ifopa]

👉 Final Reminder: Join our September Bereaved Families Virtual Meeting on Thursday, September 10, at 8 pm EDT 💙

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/Cr8kz9P6mA

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

👉 Reminder: Join the Peer Support Group for Adults with FOP
🗓️ Tuesday, September 8 at ⏰ 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/i69wNVxZ5O

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

[IFOPA @ifopa]

New Resources: Learn More About Pasatru™ (garetosmab) 💙

Following the FDA's recent approval of Pasatru™ (garetosmab) to treat FOP, @Regeneron has launched two new educational resources for the community.

👉 Visit https://t.co/AoA57XIyYX to learn more about Pasatru™ and what it may mean for people living with FOP.

If you're a member of the U.S. FOP community, age 18 or older, and interested in learning more about Pasatru™, we also encourage you to share this healthcare provider resource with your doctor:

👉 https://t.co/3rAcadsQvV

This site offers detailed clinical information to help your care team better understand this treatment option and determine whether it may be right for you. As always, treatment decisions should be made in partnership with your doctor. 🩺

📌 Learn more about the FDA approval: https://t.co/T416mBd390

[IFOPA @ifopa]

The 7th FOP Drug Development Forum Kicks Off Tonight! 🎉🔬

We're thrilled to welcome researchers, clinician scientists, and industry partners from around the world to Toronto for the 7th FOP Drug Development Forum!

None of this would be possible without our sponsors' generous support. Thank you to:

VISIONARY SPONSOR
Regeneron

LEADERSHIP SPONSOR
Mirum

SUPPORTER
Ipsen

FRIEND OF DDF
āshibio

Your partnership helps bring together the global FOP community to share research, foster collaboration, and accelerate progress toward better treatments and, one day, a cure. 💙

Here's to a productive and inspiring few days ahead! 🔬✨ #FOPResearch #ResearchProgress #TranslationalResearch

[IFOPA @ifopa]

💡 Do you know what Pasatru™ is?
It is the brand name for @Regeneron's drug garetosmab, which has been approved today in the United States to treat FOP.

Pasatru™ (garetosmab) is only the second drug approved for FOP in the U.S., and the first shown to have an impact on both bone growth and flare-ups.

As we announce this decision, we are deeply grateful to people living with FOP from around the world who participated in two pivotal trials of garetsomab: LUMINA-1 Phase 2 and OPTIMA Phase 3.

We also want to thank Regeneron and its employees for their long-standing commitment and dedication to the FOP community. This drug was invented by scientists at Regeneron who were looking for ways to treat FOP by blocking heterotopic bone growth.

📌 Learn more and read Regeneron’s press release: https://t.co/T416mBd390

Congratulations to the FOP community on this very special day! 💚💙 #garetosmab #DrugDevelopment #RareDisease

[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]

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, August 18 🕛 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 psychologist Dr. Al Freedman (@amf41)

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