In a country as vast and diverse as India, rare disease patients often go unnoticed, unheard, and unsupported. But for 84 families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare and disabling genetic condition, FOP Trust India has become a pillar of hope, care, and action. Through its dedicated efforts, the trust is not just offering medical help—it’s building a community, restoring dignity, and lighting the path forward. Today, this mission needs your support more than ever.
FOP is one of the rarest conditions in the world, where soft tissues gradually turn into bone, leading to progressive disability. For the 84 families connected to FOP Trust India, everyday life includes medical uncertainties, social isolation, and financial burdens. The trust has stepped in to bridge these gaps—one family, one consultation, and one act of kindness at a time.
From remote villages in Assam and Jharkhand to urban homes in Delhi, Chennai, and Maharashtra, FOP Trust India facilitates online and in-person consultations with expert doctors. They coordinate emergency prescriptions, help manage flare-ups, and arrange specialized treatments such as Pamidronate therapy. This ensures that no matter where a patient lives, they are not alone in their journey.
But healthcare is just the beginning.
The trust goes beyond medicine to address real-world challenges: providing mobility aids, guiding families through disability certification processes, helping with educational support, and even covering travel and consultation expenses for those who can’t afford them. They have documented and followed up on each of the 84 families—updating addresses, tracking treatment history, and offering regular emotional and informational support.
FOP Trust India also believes in spreading awareness to ensure early diagnosis and reduce stigma. They have organized awareness programs for nursing students, health professionals, and communities, educating people about FOP and sensitizing them to the needs of those living with it.
All of this—every consultation, awareness session, letter sent, database update, and medicine couriered—is possible because of donations. And that’s where you come in.
To continue supporting these 84 families, the trust needs help. Monthly costs for consultations, medicines, awareness campaigns, postage, and emergency assistance quickly add up. A typical online consultation costs around ₹1,000–₹1,500 per patient. Travel costs for home visits, assistive devices, and even minor home modifications to make life easier for these patients require continuous funding.
Even a small donation can have a big impact. A ₹500 contribution can cover part of a consultation fee. ₹1,000 can help a family receive educational support or vital medication. Larger donations can fund awareness programs or infrastructure aid like building a bathroom accessible to a disabled child.
Your support can help a mother stay home with her child by funding a sewing machine. It can help a young girl with FOP attend school with dignity. It can bring timely medical help to a child in pain in a remote corner of the country.
FOP Trust India is doing the work. You can help them do more.
Join hands with us. Donate. Share. Support. Because no family should face FOP alone—and with your help, they won’t have to.
