Awareness is one of the most powerful tools in the fight against Fibrodysplasia Ossificans Progressiva (FOP). In September, new partnerships and local initiatives showed how collaboration can spread knowledge and protect patients from harmful practices.
Local Partnerships with Global Impact
Discussions with the Lions Club Vellore moved forward, with a plan to sign an MoU later this month. This partnership will support awareness programs throughout 2025–26, reaching schools, hospitals, and community groups. By engaging trusted organizations, FOP Trust ensures that messages about flare-up management and safe treatment reach a wider audience.
Doctors and Database Expansion
Awareness also means ensuring medical professionals can recognize FOP early and respond correctly. This month, families like Harsh Maurya’s were guided toward accurate genetic testing after initial misdiagnosis. At the same time, the Trust expanded its state-wise patient database, updating phone numbers and email contacts. These steps strengthen communication and ensure no family is left behind.
Families as Awareness Leaders
Awareness doesn’t only come from institutions—it also grows within families. Arzaan’s father in Nagpur expressed interest in hosting an awareness program locally and even suggested organizing an event for World Disability Day 2025 in Delhi to capture national attention. Such leadership shows how families can become advocates for the wider FOP community.
A Shared Mission
Each partnership, each updated record, and each family-led initiative brings FOP out of the shadows. Awareness not only prevents harmful interventions but also builds empathy and support in society. Together, families, doctors, and organizations are shaping a future where rare diseases like FOP are no longer misunderstood or ignored.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
