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 […]
Field officer Selva Kumar continued his rural outreach this October, traveling across Tamil Nadu to meet families, identify undiagnosed FOP cases, and connect them with expert medical care.His visits ensure that even patients in remote areas can access guidance from Amara Hospital and specialists like Dr. Vrisha Madhuri. Selva also worked closely with the Lions […]
When Kartik Pateria from Madhya Pradesh began facing the challenges of Fibrodysplasia Ossificans Progressiva (FOP), his family turned to FOP Trust India for guidance.In early October, the Trust facilitated an online consultation with Dr. Vrisha Madhuri at Amara Hospital, giving Kartik and his family renewed hope. His medical details — from age at onset to […]
Patient registries have become a cornerstone of FOP research. These databases record key details about patients’ health journeys — from diagnosis and flare-ups to medication history — allowing researchers to design better trials and treatments. In India, the FOP Trust Database is updated regularly through consultations at Amara Hospital, led by Dr. Vrisha Madhuri.During the […]
The International FOP Association (IFOPA) continues to strengthen global collaboration through partnerships with research centers and rare disease networks.These initiatives are helping accelerate clinical trials, improve data accuracy, and ensure better representation from developing countries like India. Through shared registries and virtual consultations, IFOPA enables doctors to access the latest FOP Treatment Guidelines — ensuring […]
For Shraya Pokhrel from Nepal, the first online consultation with Dr. Vrisha Madhuri was a turning point. Network issues and scheduling challenges could not stop the session, where Dr. Madhuri assessed his condition, prescribed medication, and explained the FOP protocol. For his father, the consultation brought much-needed clarity. His doubts about the disease and treatment […]
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 […]
The third week of September showcased the importance of timely consultations and consistent reviews in FOP management. On September 22, Shraya Pokhrel from Nepal had his first online consultation at Amara Hospital with Dr. Vrisha Madhuri. Despite technical challenges, the session was completed successfully. Dr. Madhuri prescribed medication, explained the FOP protocol, and answered his […]
Families living with FOP often struggle with uncertainty, especially during flare-ups. The International FOP Association (IFOPA) bridges this gap by offering global support tools that guide safe decisions. From emergency medical cards to step-by-step flare-up protocols, IFOPA resources are designed to prevent harmful actions like biopsies or nerve blocks. In September, families like Shraya’s from […]
