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7th FOP Drug Development Forum:
In-Person and Virtual Attendance Options
The FOP Drug Development Forum (DDF), being held August 27-30 in Toronto, Canada, 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 fibrodysplasia ossificans progressiva (FOP).
📍 Toronto, Canada
📅 August 27-30, 2026
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The DDF is a unique opportunity to share innovative research, foster collaboration, network, and advance therapies for people living with FOP.
We hope you will take advantage of networking and collaboration opportunities by attending in person, but the DDF offers a virtual attendance option. Email ddf@ifopa.org for a registration discount code.
This year's DDF had a record number of abstract submissions. Content includes:
Clinical Trials in FOP
- Updates on OPTIMA, PROGRESS, STOPFOP and ANDECAL
12-Minute FOP Talks
- Real-world Evidence with palovarotene
- Drug Discovery and Drug Repurposing
- Surgery and FOP
- Emerging Insights into the Biology of FOP
- FOP Case Studies
- HO Disorders: Intersection with FOP Biology and Treatment
- The Future of Cure: Gene Therapy for FOP
| | FOP Educational Opportunities | | |
Case Studies in Diagnosing and Managing FOP
This educational webinar, hosted by Christiaan Scott, MD, Professor of Pediatric Rheumatology at the University of Ottawa, and Raphaella Stander, MBCHB, Pediatrician at Atlantic Children’s Practice, focused on three case studies to provide doctors with education on best practices to:
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- Suspect and diagnose FOP
- Monitor and manage younger children with FOP
- Monitor and manage older children and adults with FOP
CheckRare is a leading digital media company focused on rare diseases. CheckRare provides high-impact education and awareness programs, connecting healthcare professionals with meaningful content and expert insights.
This accredited continuing education program is supported by an educational grant from Ipsen Biopharmaceuticals and jointly provided by the American Academy of CME and CheckRare CE.
CREDITS: 1.0 CME | DURATION: 1.0 hours | EXPIRES: 10/1/2026 | FEE: $0
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Important Announcements About PROGESS, the Clinical Trial for Zilurgisertib
On May 6, 2026, Mirum Pharmaceuticals announced that it had licensed the drug zilurgisertib, an ALK2 kinase inhibitor, currently being developed by Incyte.
Their press release announced:
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Data from Part 1 of the PROGRESS trial (patients aged 12 and up) has been submitted to the US FDA as part of a New Drug Application (NDA). The NDA has been accepted and has Priority Review, with an expected decision date of September 26, 2026.
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A Compassionate Use Program for individuals with FOP, ages 12 and up, living in the United States. Licensed physicians in the US can get more information about compassionate use of zilurgisertib by emailing compassionateuse@mirumpharma.com
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Exciting FOP Clinical Trial Updates Shared at ENDO
It was a big weekend for the FOP community at ENDO 2026, the leading global meeting on endocrinology research and clinical care hosted by the Endocrine Society.
Regeneron Pharmaceuticals shared data from its Phase 3 OPTIMA clinical trial, which included 63 people with FOP ≥18 years of age through 56 weeks of treatment (21 on placebo, 19 on 3 mg/kg garetosmab, 23 on 10 mg/kg garetosmab).
| | | Incyte and Mirum Pharmaceuticals shared data from their Phase 2 PROGRESS clinical trial, which included 63 people with FOP aged ≥12 years through 48 weeks of treatment (24 weeks of placebo-controlled treatment, followed by 24 weeks of open-label zilurgisertib). | | |
Results from FOP PROGRESS Trial Featured by CheckRare
Joanne Quan, MD, Chief Medical Officer of Mirum Pharmaceuticals, discusses results from the PROGRESS study of zilurgisertib in patients with FOP.
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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.
| | | To Share With Your Patients | | |
Living with FOP has many challenges, and this new on-demand session can help.
In this 30-minute session, Living Well With FOP, 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
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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. | | |
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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Managing Urinary Tract Infections:
Special Considerations in FOP
In individuals with FOP, urinary tract infections warrant particular attention. Focal inflammation associated with infection may increase the risk of triggering disease flare-ups, necessitating timely recognition and appropriate management.
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At the same time, this clinical vigilance must be balanced against the risks of over-treatment. Because asymptomatic bacteriuria is common, particularly among catheterized patients, unnecessary antibiotic use should be avoided to minimize antimicrobial resistance and preserve treatment effectiveness. Thoughtful assessment and evidence-based treatment can improve outcomes while reducing unnecessary antibiotic exposure.
In this article, you'll get:
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Insights from a urologist: Dr. Jakko Nieuwenhuijzen, Amsterdam UMC, Amsterdam, The Netherlands
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Insights from an FOP expert: Marelise Eekhoff, MD, PhD, Internist Endocrinologist, Amsterdam UMC, Amsterdam, The Netherlands, Member of the ICC on FOP
- Insights from Carli, a woman living with FOP
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Join FOP Experts at the 2027 FOP Family Gathering
Every other year, the International FOP Association (IFOPA) hosts a Family Gathering bringing FOP families and healthcare providers together to connect and learn from each other.
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The Gathering is a one-of-a-kind opportunity for HCPs to:
- See a variety of patients living with FOP
- Gain a better understanding of FOP comorbidities and how they are managed
- Get the latest information on FOP treatments
- Learn and network with FOP experts during Ask-a-Doctor visits
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In 2025, Christine Rhodes Dekko, MD, attended her first Family Gathering after caring for a woman with FOP for many years. Dr. Dekko shared...
"The IFOP family gathering was a great experience for me as a primary care provider. It provided awareness of new clinical trials, upcoming medication treatments, as well as routine surveillance and maintenance, which is critical for FOP patients.
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I was inspired by the stories of the challenges they faced in college and in establishing independence as adults.
I thought the one-on-one interaction with the FOP experts was an amazing opportunity to ask questions and get expert opinions immediately. Thank you for giving me the opportunity to participate!"
We hope you'll join us s at the next Family Gathering June 24-26, 2027, in Philadelphia.
Want more information? Contact Melissa Davis, Family & Provider Support Coordinator, at melissa.davis@ifopa.org.
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