This month brought steady progress across consultations, diagnoses, and treatment coordination. From Shraya in Nepal to Ashik in Chennai, timely follow-ups ensured that flare-ups were managed quickly and safely. Dr. Vrisha Madhuri emphasized preventive care alongside treatment—urging the use of helmets, spirometry, and regular reviews to track mobility and lung health. Pamidronate therapy, prescribed in […]
Protocols are more than just instructions—they are the compass that guides families through FOP’s uncertainty. Written care plans, shared by FOP Trust and Dr. Vrisha Madhuri, help families make quick, confident decisions during flare-ups and emergencies. In october, several parents expressed gratitude for having these clear guidelines. Whether managing pain, preventing injury, or coordinating with […]
On 25 October 2025, the Lions Club of Vellore hosted its World Polio Day program at Bramma Gnana Sangam. With support from FOP Trust, the event included a special FOP awareness segment to educate health professionals and the public about the rare disease. Pamphlets were released by Dr. Prakash Iyappan, Senior Orthopedic Surgeon, Tamil Nadu […]
Following the success of last week’s awareness drive, discussions continued between FOP Trust, the Lions Club of Vellore, and local youth groups to integrate FOP awareness into World Polio Day events. The collaboration emphasizes using existing community health networks to spread knowledge about FOP symptoms, early detection, and care pathways. Through these joint efforts, awareness […]
The week concluded with an impactful FOP Awareness Program organized with the Vellore Lions Club.Community members, youth groups, and healthcare professionals joined to learn about early diagnosis, FOP care protocols, and the emotional needs of rare disease patients. Planning for World Polio Day awareness drives was also finalized, supported by an officially sealed MoU with […]
September’s awareness activities highlighted the power of both partnerships and grassroots action. Pamphlets were distributed during a government health and welfare camp in Vellore City, bringing FOP knowledge directly to families who may otherwise never hear of the condition. These efforts reduce the risk of harmful procedures and promote early diagnosis. Simultaneously, partnerships with groups […]
The field team spent the week building partnerships and strengthening patient support systems. Meetings with Vellore Lions Club focused on organizing awareness programs, while discussions with Rotary Club officials explored future MoUs. Talks also began with the Reach India Foundation, signaling potential collaboration for community support. On the organizational side, the team worked on database […]
Awareness is more than information—it is action that protects lives. This week, partnerships and patient stories highlighted how awareness shapes better care. Through discussions with the Lions Club Vellore, FOP Trust India expanded its reach into community programs that will run through 2025–26. These partnerships ensure that schools, hospitals, and families gain exposure to safe […]
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 […]
Living with Fibrodysplasia Ossificans Progressiva (FOP) often feels overwhelming for families. The disease is rare, unpredictable, and every flare-up brings fear of what might happen next. But clear, written protocols transform this uncertainty into confidence. Why Protocols Matter Families often face split-second decisions—whether to go to the hospital, which medicines to give, or how to […]
