Godfrey Baguma, who is best known as Ssebabi, is a middle-aged man who entered the limelight after winning an ugliness competition in 2002. Ugliest Man? The now 50-year-old man is a comedian, singer, and shoemaker from Uganda. Born on May 16, 1973, Baguma faced struggles as his mother left him behind when he was a […]
Ipsen’s new sponsored TikTok features the popular “Of course” trend and two social influencers, but with a rare disease twist. The short video shows two young women, Carli and Erin, using the familiar dialogue as a way to explain the symptoms and adaptations they make in living with fibrodysplasia ossificans progressiva (FOP). “I have FOP, […]
FOP is a rare genetic disease characterized by progressive and systemic heterotopic ossification (abnormal bone formation in soft tissues). Most FOP patients harbor mutations in the ACVR1 gene, encoding one of the type I BMP (Bone Morphogenic Protein) receptors. Through a previous collaboration with CiRA Associate Professor Makoto Ikeya, Toguchida’s team utilized iPS cells derived from FOP patients […]
If you participate in any of the FOP community’s online support groups you’ve heard discussions about off-label treatments for FOP. The International Clinical Council (ICC) on FOP, an autonomous group of FOP experts from around the world, recently issued a Statement Regarding Off-Label Medications for the Management of FOP. At the 2023 FOP Family Gathering, during the […]
The participation of patients with a diagnosis of classic fibrodysplasia ossificans progressiva (FOP) who have previously undergone surgery is being sought for a study that involves the review of medical records. We are asking for the participation of patients who have the diagnosis of FOP confirmed by sequencing, and have previously undergone surgical excision of HO for […]
On February 19, 2024, andecaliximab, a highly selective antibody inhibitor of MMP9, was granted orphan drug designation by the European Medicines Agency (EMA). Learn more On March 19, 2024, the U.S. Food & Drug Administration (FDA) also granted andecaliximab orphan drug designation. Learn more It is important to remember that requesting regulators like the EMA and FDA […]
On September 28, 2023, Regeneron published the results of their Phase 2 LUMINA-1 Clinical Trial of the drug garetosmab in Nature Medicine, a peer-reviewed publication. Regeneron also published clinical pharmacology results from the LUMINA-1 Trial in the Journal of Clinical Pharmacology. To support the understanding of these results by FOP families, a graphical plain language summary of […]
Getting your child to brush their teeth well and regularly can be a challenge for any parent. For children with FOP, it can be especially difficult to maintain oral hygiene but it’s critical to managing their increased vulnerability to oral diseases. Preventing cavities and other oral health issues is key to preventing FOP flare-ups in […]
FOP impacts the entire family. That’s why we’re passionate about offering a wide variety of resources for families and supporting you through every unique stage of life with FOP. We’re grateful for each of you who participated in our community in 2023 and look forward to continuing to see you in 2024. We hope you’ll […]
On September 28, 2023, Regeneron published the results of their Phase 2 LUMINA-1 Clinical Trial of the drug garetosmab in Nature Medicine, a peer-reviewed publication. Regeneron also published clinical pharmacology results from the LUMINA-1 Trial in the Journal of Clinical Pharmacology. Also on September 28, Vanderbilt University Medical Center, one of the sites for the LUMINA-1 Trial, issued […]
