The power of people against cure
Create awareness support
families and find Cure
We help Fibrodysplasia Ossificans Progressiva Patients in India
Stoneman disease
Help make a better world free from
Fibrodysplasia Ossificans Progressiva
What Is FOP?
DO You Know anyone with FOP?
FOP, a rare genetic disorder, turns muscles and connective tissues into bone, restricting mobility.
It’s often marked by big toe malformations. Despite mental wellness, FOP patients face physical immobility.
No cure exists yet. Refer potential cases to us for a chance to win ₹1000.
Clinical Characteristics of FOP:
FOP Trust connects all India FOP Patients with best available doctors & hospitals.
FOP Trust provides support & information to FOP patients and families in India. Accurate information and connection with others is crucial when dealing with an ultra rare or orphan disease like FOP.
FOP Trust raises awareness of FOP in the community, including the medical community, on the symptoms, diagnosis and medical management of FOP.
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Latest non-government organizations news and
updates, special reports, videos, and more
February 13, 2024
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 […]
February 13, 2024
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 […]
November 30, 2023
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 […]