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 […]
One of the most powerful lessons of August was the importance of following medical protocols. Families like Helal’s in Bangladesh and Mayashree’s in Manipur showed how local doctors can safely deliver therapies when guided by expert instructions. Protocols prevent risky decisions like unnecessary surgeries or biopsies. They also ensure flare-ups are managed quickly, reducing pain […]
The field team worked on several key initiatives during the last week of August: These actions show how fieldwork goes beyond individual care—building networks that strengthen early diagnosis, referrals, and community awareness. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
Despite growing awareness, myths around FOP still cause harm. Some believe it is arthritis, while others think it develops after injuries. In truth, FOP is a genetic condition caused by a mutation in the ACVR1 gene, leading soft tissues to transform into bone. These misunderstandings often push families toward dangerous treatments like biopsies or surgeries, […]
Why Early Recognition is Crucial Fibrodysplasia Ossificans Progressiva (FOP) is extremely rare, yet its first signs often appear early in life. Children may show stiffness, swelling, or unusual lumps. Because the disease is not widely known, these symptoms are often mistaken for cancer or arthritis. Misdiagnosis can lead to dangerous procedures, such as biopsies or […]
The FOP Trust’s field team spent early August expanding its support network. After connecting with orthopedic specialists at the Bengaluru Ortho Conference, follow-up requests were sent to doctors like Dr. Abisek and Dr. Raj Singh to share patient details and join the referral system. These connections are vital for identifying new cases early. By adding […]
