For most people, Fibrodysplasia Ossificans Progressiva (FOP) is an unfamiliar word—complex, obscure, and distant. But for families living with it, FOP is a daily reality that affects every aspect of life. Thankfully, community-led efforts, international collaboration, and generous individuals are changing what it means to live with this condition.
At the heart of this change are two forces: FOP Trust India and IFOPA.
FOP Trust India is doing the tireless work of direct community care. In the last year alone, they’ve supported over 84 families across the country—arranging more than 100 medical consultations, sending personalized FOP information letters to homes, distributing aid, and advocating for rare disease awareness in nursing colleges and hospitals. They’re proving that even in low-resource settings, empathy and dedication can bring change.
Meanwhile, IFOPA is providing the global structure—driving research, uniting experts, funding grants, and offering educational resources in multiple languages. Through international conferences, global registries, and family support programs, they ensure that no patient—whether in the US, India, or Bangladesh—feels alone.
This synergy between local action and global leadership is powerful.
It means a child in a remote village in Assam can get expert medical advice because of an Indian trust, using protocols informed by international research. It means a nurse in Vellore now knows how to identify FOP symptoms early. It means families from Delhi to Dhaka are forming a resilient, informed community—together.
But the future of FOP support depends on sustained funding and awareness.
Every awareness poster printed, every therapy session funded, and every new diagnosis guided with compassion is powered by donations. Whether you’re an individual, a company, or a foundation, your contribution matters. It turns into a consultation, a wheelchair, a scholarship, a voice.
Together, we can make FOP not just known—but fought, managed, and one day, cured.
