The final week of September highlighted both direct patient care and organizational growth for FOP Trust India. On the patient front, Sanskriti from Uttar Pradesh had a follow-up consultation after her flare-up. Encouragingly, her range of motion showed improvement, and she was prescribed another course of medication. Meanwhile, Geetika from Andhra Pradesh reported better recovery […]
For families living with FOP, the first consultation often feels like the most important step. This was true for Shraya Pokhrel, a child from Nepal, who recently had his first online consultation with Dr. Vrisha Madhuri at Amara Hospital. Despite challenges like network issues, a packed hospital schedule, and the complexity of Shraya’s symptoms, the […]
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 […]
This week showed the importance of both immediate treatment and long-term planning. On September 15, Sivaji from Andhra Pradesh was reviewed after new flare-up concerns. His earlier tests had not revealed clear results, but new X-rays suggested features of FOP. To ensure accuracy, Dr. Vrisha Madhuri recommended further testing and sought additional input from a […]
The International FOP Association (IFOPA) continues to serve as a lifeline for families worldwide. Its global support network provides practical tools, emergency guidelines, and educational resources that families can trust in moments of uncertainty. In September, families like those of Akshat from Rajasthan and Helal from Bangladesh relied on IFOPA’s flare-up protocols to guide safe […]
Sivaji, a young man from Andhra Pradesh, has been navigating the uncertainty of a suspected FOP diagnosis. His case reflects both the challenges of rare disease detection and the power of persistence in seeking answers. After developing symptoms that raised concerns, Sivaji underwent tests and X-rays. Unfortunately, his earlier reports did not reveal a clear […]
September was a month of both outreach and organization for FOP Trust India. At the community level, the Trust deepened its partnership with the Lions Club in Vellore. During a meeting on September 19, team members spoke about FOP, distributed pamphlets to club members, and later joined a welfare program to raise public awareness. These […]
FOP research has made exciting strides lately. Several drugs under development show promise in slowing or preventing heterotopic bone formation (HO) and improving quality of life. Here’s what’s new: 🔬 Key Investigational Drugs ⚠️ What These Mean for Patients 🔍 Looking Ahead Research continues at a fast pace. With each trial, we gain better understanding […]
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 […]
For families living with Fibrodysplasia Ossificans Progressiva (FOP), isolation often feels like the greatest challenge. With so few cases worldwide, many parents worry they are alone in their journey. The International FOP Association (IFOPA) bridges this gap through global support tools designed to make reliable information accessible anywhere. Practical Tools for Daily Care From emergency […]
