Every year on Rare Disease Day (Feb 28) and FOP Awareness Day (April 23), communities across the globe come together to spotlight the challenges faced by people living with rare conditions. For those living with Fibrodysplasia Ossificans Progressiva (FOP), these days are more than just symbolic—they are a call for recognition, resources, and respect.
🔍 The Reality of Rare
In India alone, there are over 70 million people living with rare diseases. FOP, affecting just 1 in 2 million, often goes undiagnosed or misdiagnosed—sometimes as cancer or muscular dystrophy. Without awareness, children face delayed treatment, stigma, and isolation.
💡 Why Awareness Matters
- Early Diagnosis Saves Lives: Doctors who recognize rare conditions early can prevent harmful interventions (like biopsies or surgeries that worsen FOP).
- Public Awareness Reduces Stigma: Rare disease patients deserve dignity—not pity.
- Awareness Drives Action: More awareness = more donors, research, and policy change.
🤝 How You Can Help
- Share FOP stories on social media.
- Donate to organizations like FOP Trust India.
- Organize a school or workplace awareness talk.
- Wear blue and green on Rare Disease Day and tag @foptrustindia.
Together, we can make the invisible visible.
