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Introducing Journey to Discovery: A Breakthrough Built on Hope
The search for FOP's cause is a story of persistence, creativity, and community. As we countdown to FOP Awareness Day on April 23, we're launching something special: Journey to Discovery: A Breakthrough Built on Hope—a new video series produced by IFOPA that revisits the extraordinary story behind the FOP gene discovery and celebrates the 20th anniversary of this turning point in the FOP community.
Watch this special preview >
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New episodes drop every Tuesday, Thursday, and Saturday starting March 31, building toward a special online event on Global FOP Awareness Day, April 23.
Read more about this special series, and follow us at youtube.com/IFOPA so you don't miss a single episode!
| | FOP Educational Opportunities | | |
Last Chance: Join a
Collaborative Community of Practice for FOP Care
Are you a healthcare professional caring for at least one FOP patient? Do you expect to be involved in FOP care in the foreseeable future?
This Community of Practice (CoP) will unite experts and healthcare providers to enhance local care for individuals living with FOP.
Key program components include:
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CoP Program: Six one-hour interactive virtual sessions offered April through November 2026, offering training, consultation, mentoring, guidance, and resources for effectively managing and supporting FOP patients.
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Program Evaluation: Participation in an evaluation (observations, surveys) to assess the outcomes and impact of the CoP.
By joining this initiative, you could improve the quality of care for your FOP patients by gaining valuable insights and support from FOP experts:
| | Matthew Drake, MD, PhD,
Hospital for Special Surgery | | |
Eric Rush, MD, FAAP, FACMG, CCD,
Children's Mercy
| | Melissa Davis, OTR/L, International FOP Association | | This study is conducted by AXDEV Group Inc., a leading international performance improvement and research organization, in collaboration with IPSEN Biopharmaceuticals. | | |
Join Us at the 7th FOP Drug Development Forum
The FOP Drug Development Forum is the premier biennial international scientific conference focused on advancing the development of safe and effective medications to treat and prevent the life-altering signs and symptoms of FOP.
📍 Toronto, Canada
📅 August 27-30, 2026
The DDF is a unique opportunity to share innovative research, foster collaboration, network with leading experts, and advance therapies for people living with FOP.
Who Should Attend?
Due to the scientific content being shared, the DDF is designed exclusively for researchers, clinicians, pharmaceutical/biotech employees, and regulatory agency representatives.
We look forward to seeing you in Toronto as we work together to advance the future of FOP therapeutics.
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Download the FOP Diagnostic Handbook
Tin Soldiers Global, an international organization dedicated to finding patients with FOP and other musculoskeletal conditions, has many resources for healthcare professionals, including an FOP Diagnostic Handbook.
The FOP Diagnostic Handbook, developed in collaboration with the International Clinical Council (ICC) for FOP, has been translated into 14 languages. This downloadable resource can be shared digitally and printed for free from the Tin Soldiers website.
The handbook was created in response to the abundance of complex, dense medical information, much of which was not easily accessible or practical for frontline clinicians. It was designed to provide clear, concise diagnostic guidance directly to healthcare professionals, wherever they are in the world.
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Clinical Studies & Trials
To see a full list of FOP clinical trials, visit ifopa.org/ongoing_clinical_trials_in_fop
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Breaking News from Regeneron Regarding Garetosmab
On February 19, Regeneron Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) accepted for Priority Review the Biologics License Application (BLA) for garetosmab for the treatment of adults with FOP.
Read the press release >
This is exciting news, but it does NOT mean that garetosmab has been approved as a treatment for FOP. Instead, it means the FDA is doing a Priority Review of Regeneron's Biologics License Application for garetosmab with a decision expected in six months.
THANK YOU to the FOP community members who participated in both the Regeneron LUMINA-1 and OPTIMA trials, which tested the safety and efficacy of garetosmab. We are grateful to the 11 trial sites, their Principal Investigators, and study teams for making this trial available to our FOP families.
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Observational Pre-Post Study of
Off-label Use of Anti-IL1 Therapies
Do you have a patient for whom you have prescribed anakinra or canakinumab, OR are you considering the off-label use of one of these drugs with an FOP patient?
Ed Hsiao, MD, PhD, University of California, San Francisco, is conducting an observational study of the off-label use of these drugs in FOP.
Learn more at ifopa.org/other_research
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ICC Issues New Editorial on Clinical Trials
The International Clinical Council (ICC) on FOP—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 two Phase 2 FOP clinical trials. Since then, we've had five more Phase 2 and 3 clinical trials.
The ICC just released a new editorial on clinical trials.
We're grateful to the ICC for the time and effort they dedicate to educating and supporting the FOP community throughout its clinical trial journey.
| | To Share With Your Patients | | |
Living with FOP has many challenges, and this new on-demand session can help.
In this 30-minute session, Dr. Richard Keen and IFOPA Family & Provider Support Coordinator Melissa Davis share simple, real-life tips to help with:
- Managing flare-ups
- Staying safe during doctor or dentist visits
- Exploring new treatment options
- Hearing stories from others in the FOP community
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Richard Keen, BS, PhD, FRCP,
The Royal National Orthopaedic Hospital, ICC on FOP
| | Melissa Davis, OTR/L, International FOP Association | | Your patients can watch this webinar on demand to feel more confident in their everyday FOP care. Share the link below. | | This activity is supported by an independent medical education grant from Regeneron Pharmaceuticals, Inc. | | |
Have You Checked out the IFOPA's Ability Toolbox Program?
The Ability Toolbox Program, led by IFOPA's Family & Provider Support Coordinator, Melissa Davis OTR/L, empowers individuals with FOP by promoting independence through the use of tools and home adaptations.
The cornerstone of the Ability Toolbox Program is the Online Guidebook, a database of adaptive tools, equipment, home modifications and tips for the FOP community to access as a resource for independent living.
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Individuals with FOP and their family members and caregivers can use the Online Guidebook to discover and share useful tools, tips and experiences that help make living with FOP more manageable.
Tools are:
- Listed in different categories based on activities of daily living
- Searchable by keyword, activity or mobility restriction
Over 540 commercially purchased tools and homemade tools that members of the FOP community have crafted are featured with descriptions, pictures, tips for use, videos (if available) and links to vendor sites for purchasing.
Melissa Davis, an Occupational Therapist, is also available over email, Zoom, WhatsApp, phone, and text to consult with families and healthcare professionals about adaptive tools when FOP progression limits independence and comfort.
Email: melissa.davis@ifopa.org
Phone and WhatsApp: +1 (605) 877-5289
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Learning from Real-World Patient Experiences
Patients have much to teach us about the conditions they live with. In each issue of FOP Link, we take the opportunity to have a person living with FOP share about the comorbidities they experience. Then a doctor, who is an FOP expert, shares from the FOP Treatment Guidelines about the proper way to care for a patient experiencing the symptoms or condition.
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Insights on Nutrition and FOP
Individuals with FOP are at higher risk for nutritional deficiencies for several reasons.
- Chewing can become difficult when the jaw stiffens
- Swallowing may be affected by neck or thoracic flare‑ups
- Gastric emptying and intestinal mobility can be affected by spinal deformation and scoliosis
Even without mechanical challenges to eat, many patients with FOP experience gastrointestinal symptoms such as early fullness, constipation, reflux, or nausea, all together causing a poor appetite and reduced intake.
In this article, you'll get:
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Insights from an FOP expert: Staffan Berglund, MD, PhD, Associate Professor in Pediatrics at Umeå University Hospital, Umeå, Sweden and a member of the ICC on FOP
- Insights from an FOP family—Hugo and his mom Marie
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Care guidance from the ICC on FOP Treatment Guidelines
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Resources to share with your patients from the IFOPA
Learn more about nutrition and FOP >
| | Help us learn more about you and your FOP educational needs by completing this short survey > | | | | |
