1983 : Beginnings
Hemophilia Federation India (HFI) was established on 24th November 1983 at New Delhi with the initiative of Mr Ashok Bahadur Verma, a small business man born with sever hemophilia A., in the presence of Prof. Mannucci and Rev Allen Tanner, then Chairman of World Federation of Hemophilia and other PWH and family members from India.

1992: Hemophilia Society Mumbai (Chapter) 
After formation of Hemophilia Federation of India at New Delhi in 1983, various chapters in major cities started in India. Hemophilia Society Mumbai Chapter started in Mumbai with initiative of 25-30 hemophilics, doctors and social workers in 1992. Around that time, persons living with Hemophilia were being treated at various government and private hospitals with Cryo, FFP and whole blood under various hematologists or physicians without any comprehensive treatment centre in Mumbai.

The treatment center was started in KEM Hospital with the help of ICMR. The Hematology ward No. 42 in KEM Hospital slowly started developing upto comprehensive care center. This center later recognized as internationally affiliated by World Hemophilia Federation. The center was equipped with co-agulation lab, factor assay and all other expertise formed as a comprehensive care center.   

With various activities and lobbying with Government the chapter started its development. In the year 2000 the Govt of Maharashtra passed a GR initiating free blood products to Hemophilia patients. Further lobbying resulted help of Rs. 50 lakhs and again Rs, 25 lakhs which distributed among 8 chapters from Maharashtra for purchase of Anti-hemophilic Factors. As this was not enough, Mumbai Chapter further continued the lobbying to find the permanent solution for treatment of Hemophilia in Maharashtra.

2008: Delhi High Court Order
Delhi High Court who have passed an order in 2008 with directions to Govt of New Delhi to supply free AHF to BPL category and in emergency to all patients through Govt Hospitals. On the same line Allahabad High Court also issued the same directions to Govt of Uttar Pradesh. Mumbai Chapter sensitized to Govt of Maharashtra to implement the same guide lines in the state of Maharashtra through lobbying during 2009 to 2011. During this period various proposals were made for the treatment of Hemophilia, Thalassemia and Sickle Cell Anemias, however, no budgetary provision was made and Govt totally failed to implement the proposals made by themselves. The advocacy and representation to various government bodies like Ministry of Health, NRHM and BMC created the right platform to file a PIL against the Government of Maharashtra and Ministry of Health, which in turn created awareness through the print media and are hopeful in getting free treatment to PWH.

2012: Bombay High Court Order
Aggrieved with this acts of the Govt and many deaths during this period of lobbying finally Mumbai Chapter decided to file a PIL in Bombay HC in 2012 vide PIL No. 82/2012. The Bombay HC passed five interim orders. As per the last order 19.03.2013 Govt started 4 day care centers through its District Hospitals on pilot basis. These centers are Thane, Satara, Nashik and Amravati. These centers are only basic treatment for infusion of Anti-hemophilic medicines by appointing few staffs including Doctor, Nurse, and Physiotherapist on contract basis. This is not a comprehensive care of Hemophilia. As there is no hematologist and other specialties.

Thereafter, Govt decided to extend two more Centres KEM Hospital Mumbai and Sassoon Hospital, Pune. These are medical colleges and experts are available in KEM Hospital, Mumbai. Coagulation Lab, factor assay and other facilities are available in collaboration with ICMR Centre.

Today: Hemophilia Society Mumbai (Chapter)

During the History of 24 years Mumbai Chapter acted as per the rules and regulations under which this chapter is registered. It obtained 80G cert to collect donations and income tax exemption. FCRA registration obtained receiving foreign donations. During this period collecting donation and patient contributions Mumbai Chapter managed treatment of Hemophilia patients. As an International Center KEM Hospital it was always crowded and patient flow was in a huge capacity. However, a dedicated team of Doctors, volunteers and Executive Committees during respective period managed all and brought the chapter upto the certain height as on today. With the various projects from Hemophilia Federation of India and respected donors the Chapter developed and now it is having its ownership Office running with 4 Staffs.  This chapter also helped to other chapters to stand on their own feet.

Looking at the plight of the hemophiliac in reaching hospital for treatment of damage joints by therapy, the chapter has approached Velentine Trust of UK threw Dr. Alison (UK national). With the donation support of Velentine Trust and Dr. Alison the chapter has started the home visit of therapist for the patient in the year 2011 with the support of KEM Hospital Occupational Therapist.

After hearing the stories of the mothers as to what they are undergoing while taking care of their PWH child, we felt a need to form the Women’s Group, which helped them to share their feelings, where they got motivated and where they got answers to their queries. The Women’s Group was formed. The youth group was formed and the bonding between the youth group is commendable as also their work. In order to ensure good participation, we have formed an idea of formation of sub-groups, region-wise groups etc for the welfare of the society.

Some of the Committee Members have been regularly visiting the KEM ward, meeting PWH at their residence. After seeing the plight of the PWH, Mumbai Chapter started distributing medicines, fruits, food, monthly ration, education help and loan for setting business to the PWH regularly. This initiative has been supported by the Mumbai Chapter along with Youth Group and Women’s Group. Mumbai Chapter Youth Group has made the first ever short film on Hemophilia which will motivate Hemophiliacs to lead a normal life, provided they get timely support from family, friends, trusts and Hemophilia Society.

Over the years, we have lost some of our dedicated members due to the delay in seeking medical help, medical complications, factor unavailability, HIV, etc etc. At a Chapter level, we are having high hopes from HFI to get various projects from abroad and from corporates for education and concessional factors, which will in turn boost our PWH to fight against all odds. The chapter is initiating more attention to HIV, HCV and emergency cases.

With the overall support of all the members and EC members (past and present), our Donors and our dedicated doctors (the list is endless), we have reached so far but we have to go a long way to identify all the PWH and see them successful and motivated in their lives. We have created our own website.  Every year we publish Annual Report of all activities alongwith our Chapter Growth chart. Wings to fly short film, participation every year in Standard Chartered Marathon, joint camps with other chapter or different camps of chapter PWH are some of the activity of the chapter.  Our Woman’s Group and Youth Group are doing parallel activities by raising their own fund. Chapter is always encouraging them to grow further. We are always trying to balance the help to all through various projects of HFI and donations received. We are trying to fulfill the slogans of WFH and guidelines of Hemophilia Federation of India. Our team is also debating in friendly manner keeping the overall progress of PWH. Every alternate year new team is being selected/elected in the AGM and peaceful transfer of the charges and accounts has been done.

Mumbai Chapter is not being recognized with a particular name of a leader but always with its own name HEMOPHILIA SOCIETY MUMBAI CHAPTER. all the team members and all PWH are proud of our chapter. We are thankful to HFI and WFH for great support in our bad days. We are trying towards to change HEMOPHILIA community’s entire face through an important project “BORN RARE”. This project may change the thinking’s of the General public, Govt. and others and try to empower us by way of entry in the main stream of education, health, job, family life and status.