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Fibrodysplasia Ossificans Progressiva

What Is FOP?

Fibrodysplasia - Tissue thickening or scarring.
Ossificants - Hardening process turning into bone.
Progressiva - Continual development, worsening over time.

Individual with FOP appear normal at birth except for
characteristic of malformation of great (Big) toes.

FOP is a condition where muscles and tendons progressively
turn into bone a er birth, restricting movement. The disease progression rate varies and flare-ups, characterized by sudden
swelling and inflammation, occur unpredictably.

What FOP Trust Offers?

We provide comprehensive support for individuals with FOP, including:
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Medical Consultation

FOP Trust India offers specialized medical consultations for FOP patients, providing tailored care, effective treatment planning, and resources to manage this rare condition.

Mobility Aids

FOP Trust India offers custom wheelchairs and mobility aids, enhancing independence and quality of life for FOP patients by facilitating easier navigation on a daily basis.

Home Comforts

FOP Trust India enhances home comfort for FOP patients with specialized recliners and beds, tailored to ensure maximum comfort and support in their living environments.

House Modification

FOP Trust India offers house modifications to accommodate specialized recliners, beds, & mobility aids, ensuring a supportive and accessible living environment for FOP patients.

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:

Malformation of the great toes is visible at birth.

Rogue bone growth progressively restricts movement.

No ethnic, racial, or gender patterns.

Rare, progressive genetic disorder that has an estimated prevalence of 0.88 per 1 million, or approximately a prevalence of 1 in 1 million.

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.

Latest non-government organizations news and
updates, special reports, videos, and more

oxidative phosphorylation
Inhibition of oxidative phosphorylation points to a new potential treatment for 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 […]

ICC
ICC Issues Statement on Use of Off-Label Treatments for FOP

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 […]

Heterotopic Ossification
Do You Have FOP and Have Previously Undergone Surgery to Remove Heterotopic Ossification?

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 […]

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