The Bereaved Families group will meet Thursday, September 19 at 8 pm ET. 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. Sign up and submit any comments or suggestions in advance by emailing

"It was the IFOPA's idea to build the FOP Biobank to make samples available to as many researchers as possible." Dan Perrien, PhD (Daniel Perrien) of EmoryUniversity, shares how the IFOPA is working to transform the lives of people with FOP by building important research tools like

Do you know the most common methods of vaccine administration? Join Dr. Chris Scott, uOttawa, on Sunday, September 29 at 1 pm ET/19:00 CEST for an informative presentation on navigating the most common vaccines that are included in childhood immunizations, and if key vaccines

Laura Rossano completed a six-month training program to become a Certified Vocational Evaluator (CVE). This credential elevates her current rehabilitation counseling certification and allows her to complete assessments for students with disabilities. Our FOP community members

Thanks to our generous supporters, we’re able to fund mission-critical research like the STOPFOP trial, in addition to gene therapy, muscle regeneration, imaging alternatives and more. Because the IFOPA covered the cost of a principal investigator for the STOPFOP trial, the

Just two more weeks until the In Pursuit of a Cure Day of Giving on September 17 and there's only $25,000 left in match funds, If you want to be sure and have your gift matched, consider giving early 😍 💸 Thanks to all of your contributions, we've already raised $25K - once we

Reminder: Wednesday, September 11 at Noon ET / 18:00 CEST. Counseling Psychologist Dr. Al Freedman (Al Freedman), who also had a child with a rare disease, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. The Peer Support

SHOUT-OUT to each and every person who has set up personal fundraisers for In Pursuit of a Cure* ❤️ Thank you to Emma A, Stephanie B (Stephanie Burgess), Chrissy F, Susanne G, Shannon H, Carli H, Megan H, Sue K (Sue Kahn), Jon K, Kristine L, Brooke M and Tiffanie W.

Life Coach Elena Pomana kicks off our 2024 Resilient Living Program with two sessions on the topic, "Unlock Your Inner Strength: Living Your Life with Intention" on September 17 and 20, 12 PM ET / 18:00 CEST. Elena will walk us through the power of the scientifically-based RGV

Our very own Melissa Davis is back with another Ability Toolbox video. This time it's not a tool, but rather, an innovative, sugar-free treat that might help you avoid dehydration. For many in our community, staying hydrated can be a real challenge. From inaccessible cups to jaw

The In Pursuit of a Cure playlist just keeps on giving 🎵 😍 Savvy, who lives with FOP, chose "All Too Well" by Taylor Swift ❤️ Which tunes get YOU through the hard days and amplify the good ones? Comment below 👇🏽 and we'll add them to the playlist - launching September 17.

We add 3-5 new items to the Ability Toolbox Guidebook every single week - did you know that? It's a growing resource loaded with tools to help you live more independently as you navigate life with FOP. Now it's your turn - what tool do you suggest we add to the Guidebook? It

Congratulations to Eileen Shore, PhD for receiving the 2024 Lawrence G. Raisz Award from the American Society of Bone & Mineral Research (ASBMR)! This award will be presented during the ASBMR 2024 Annual Meeting in September. Dr. Shore is the Cali/Weldon Professor PennMedicine

"The IFOPA has played a major part in bringing the science forward, connecting people and bringing us to a point where new medications are on the horizon." Clemens Stockklausner, MD PhD of Klinikum Garmisch-Partenkirchen in Germany, shares how important the IFOPA is in pushing

Incyte's (@incyte) Phase 2 PROGRESS trial has new active sites in Italy, Portugal and Turkey. This Phase 2 trial of zilurgisertib is recruiting 60 patients ages 12 and up with the classic R206H and other mutations of the ACVR1 gene resulting in heterotopic ossification (HO).

THIS MONDAY, September 9, Noon ET, 18:00 CEST. The 3rd edition of the FOP Treatment Guidelines was released in July 2024 by the International Clinical Council (ICC) on FOP: ifopa.org/icc_releases_3… "The Treatment Guidelines have been instrumental in bridging the gap between the