Hemophilia Society (Mumbai) Chapter was founded in 1991 with Dr. Deepika Mohanty as the president and a small office with a very low membership.
The Hemophilia Society Mumbai (Chapter) has its roots in the tireless efforts of Dr. Devila Sahu, a pioneer in hemophilia care. Her journey began in the late 1980s in Delhi, where she witnessed the severe challenges faced by people with hemophilia (PWH). During a meeting in 1988, she encountered 20 patients suffering from advanced complications due to bleeds. This pivotal moment moved her to dedicate herself to improving the lives of PWH.
Working with the Delhi Hemophilia Society and the Hemophilia Federation of India (HFI) for three years, Dr. Sahu gained valuable insights from visiting international experts like Dr. Mauchie’s team. These experiences deepened her understanding of the pain endured by PWH and the need for structured treatment protocols.
In 1991, Dr. Sahu relocated to Mumbai, determined to extend her support to the city’s PWH community. With the help of Mr. Ashok Verma, Dr. Sunil Parekh, and other dedicated individuals, she formed a small group of 20 members. For the first 2-3 years, treatment was provided at her residence on an as-needed basis.
By 1992, the group began discussing the establishment of a dedicated treatment center. Despite initial challenges with hospitals like Bhatia and Sir H.N. Hospital, a breakthrough came through HFI’s intervention. Experts like Dr. Dipika Mohanty and Dr. K. Ghosh advised creating a comprehensive care center, leading to the establishment of a treatment facility at the National Institute of Hematology (NIH).
By the late 1990s, the Society had grown to over 400 members. To better serve the community, they established premises near KEM Hospital, making it more convenient for PWH and their families. Fundraising became a critical focus, with events like musical evenings featuring Usha Iyer and Shan drawing support from both local and international communities.
As the century turned, the Hemophilia Society Mumbai (Chapter) stood as a beacon of hope, serving a growing family of PWH and their supporters. Dr. Sahu’s vision was to pass the torch to younger, vibrant leaders dedicated to continuing this vital work. The Society’s legacy of compassion, determination, and community support lives on, driven by the shared goal of improving the lives of those “Born Rare.”
