From January to July 2025, FOP Trust India has made remarkable strides in its mission to support families living with Fibrodysplasia Ossificans Progressiva (FOP). Here’s how their work is transforming lives across India:
Medical Support: Over 100 patient consultations were coordinated, with many families receiving emergency guidance during flare-ups. Consultation fees, medications, and even genetic testing costs were covered for those in need.
Hospital Partnerships: Collaborations with Tamil Nadu State Level Children’s Hospital and Indira Gandhi Children’s Hospital opened new referral pathways. Twelve orthopedic doctors from Bengaluru pledged to refer suspected cases.
Education & Awareness: Several FOP awareness sessions were held for nursing students and local health professionals. Educational materials, spirometry usage guides, and helmet safety info were widely distributed.
Empowering Families: Multiple families shared their stories. Even those with limited means contributed to the Trust. Their strength and generosity continue to inspire the FOP community.
Digital Access: From WhatsApp group updates to resource sharing via IFOPA, the Trust ensured no family feels isolated.
This progress reflects a unified effort of compassion, collaboration, and commitment to making rare disease care accessible and impactful.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
