December 2025 eNewsletter | | |
Thoracic Deformity in FOP,
Journal of Bone & Joint Surgery, May 2025
This comprehensive article, by Fred Kaplan, MD; Paul Sponseller, MD, MBA; and Robert Pignolo, MD, PhD, examines how fibrodysplasia ossificans progressiva (FOP) leads to progressive thoracic deformity and life-limiting respiratory complications.
The authors review how chest restriction develops over time and highlight key considerations for earlier detection and management.
Read the full publication >
This topic was also addressed in a panel discussion led by the authors at the recent FOP Family Gathering held in Minneapolis.
Watch Spinal and Chest Wall Challenges in FOP: Expert Medical and Surgical Insights >
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Medical Guidelines for FOP, JBMR Plus, November 2025
The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations, authored by the International Clinical Council (ICC) on FOP, contains detailed medical information and guidelines on the symptomatic management of FOP.
The recent JBMRPlus publication summarizes the main document in 13 pages.
One reviewer wrote: “This manuscript is a model for a succinct yet thorough guideline on the management of a rare condition. It provides a reference to an in-depth, extensive online resource for those who want to take a deeper dive. This approach should be recommended for guideline summaries that are available in the literature for all conditions, both rare and common.”
Learn more and access the publication >
| | FOP Educational Opportunities | | |
Claim Your Spot Today:
Exclusive Invitation to 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: Seven one-hour interactive virtual sessions offered February 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, Family & Provider Support Coordinator,
International FOP Association
Get more information and determine your eligibility >
This study is conducted by AXDEV Group Inc., a leading international performance improvement and research organization, in collaboration with IPSEN Biopharmaceuticals.
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Check Out the New ICC Website and Members
The International Clinical Council on FOP (ICC) is an autonomous, independent group of internationally recognized physicians with clinical expertise in FOP. Established in 2017, the ICC shares best practices for clinical care and research and is available for consultation.
In November, the ICC unveiled a new website at iccfop.org.
Scroll down the home page, and you'll also see a list of its Core Members (including some new additions) along with new Associate and Advisory Members.
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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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Regeneron Pharmaceuticals Releases First Look at OPTIMA Phase 3 Trial Results
On September 17, Regeneron Pharmaceuticals issued a press release providing a first look at the top-line results from its OPTIMA Phase 3 trial of the drug garetosmab.
THANK YOU to the 63 FOP community members ages 18 and over who participated in the OPTIMA Phase 3 trial! We're also grateful for the doctors at sites in 18 different countries who served as principal investigators for this trial.
We look forward to the publication of Regeneron's full trial data and its presentation at a major medical conference in 2026.
Read the press release >
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āshibio’s ANDECAL Trial is Full
At the beginning of November, it was announced that āshibio’s ANDECAL trial of andecaliximab has fully enrolled Part 1 of their Phase 2 trial, which was enrolling in the United States.
Learn more about the ANDECA trial >
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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 by contacting Dr. Hsiao at edward.hsiao@ucsf.edu
| | To Share With Your Patients | | |
Quality of L.I.F.E. Award Applications Accepted
January 1-31
The Harold & Elaine Kaplan Quality of L.I.F.E. Award application period opens January 1. Applications are only accepted twice a year (January and July).
The Quality of L.I.F.E. Awards program provides financial assistance for individuals with FOP to purchase adaptive equipment or make home modifications.
If you or your patients have questions about the L.I.F.E. Awards, contact Family & Provider Support Coordinator Melissa Davis, OTR/L, at melissa.davis@ifopa.og or via WhatsApp at +1 605-877-5289.
Learn more about the Harold and Elaine Kaplan Quality of L.I.F.E. Awards >
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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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Respiratory Health and FOP
Lung problems can creep up on individuals with FOP in an insidious manner. As the disease advances, the abnormal bone growth can restrict and impair lung function and the ability to clear secretions. Many individuals with FOP die from pneumonia, right-heart failure, and thoracic insufficiency syndrome.
In this article, you'll get:
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Insights from an FOP expert: Angela Cheung, MD, PhD, FRCPC, University of Toronto, University Health Network, Canadian FOP Network, International Clinical Council on FOP
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Care guidance from the International Clinical Council on FOP Treatment Guidelines
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Resources to share with your patients from the IFOPA
Learn more about respiratory health and FOP >
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Connect with the IFOPA at the Special Care Dentistry Association's April 2026 Conference
The IFOPA's Family Services & Provider Support Coordinator, Melissa Davis, will be exhibiting at the Special Care Dentistry Association's SCDACON 2026 this spring in Dallas, Texas, April 16-19. If you're attending, please stop at our booth and connect with us.
Special Care Dentistry Association (SCDA) is a nonprofit membership organization of dental professionals dedicated to the oral health and well-being of people with complex dental needs.
Learn more about the SCDA >
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Save the Date for the 2027 FOP Family Gathering
We hope you'll mark your calendars to join us in Philadelphia, June 24-26, 202, for the FOP Family Gathering.
The Gathering offers:
- Two days of presentations and interactive workshops on topics related to FOP management and care, emotional health, and more
- Valuable opportunity for healthcare professionals to learn from FOP experts by observing individual meetings between families and clinicians
If you have patients who live near Philadelphia or have the ability to travel, this event is a valuable resource to share with them, and we appreciate you spreading the word early!
In addition to spreading the word to FOP families you care for, we invite healthcare professionals caring for patients with FOP to save the date, as we hope you'll join us in person.
If you're interested in learning more, please email Melissa Davis at melissa.davis@ifopa.org.
| | Help us learn more about you and your FOP educational needs by completing this short survey > | | | | |
