Projects

Projects and Partners

Over the years, HFI has had commendable success in partnering with many reputed organizations and agencies. Our collaborative projects are spread across our areas of focus.

Impactful past and ongoing projects:

• The Ministry of Health & Family Welfare – HFI conducts a sensitization workshop called “Initiative on Hemophilia Care – A Sensitization Programme and the Way Forward” on World Hemophilia Day every year with the support of the MoH&FW. The workshop’s purpose is to educate healthcare professionals, policymakers, and district-level as well as tertiary care center staff involved in hemophilia treatment. The Ministry is actively engaged in establishing national guidelines for hemophilia care, which, once released, will standardize procurement procedures. This development aligns with HFI’s vision of achieving uniform treatment nationwide, encapsulated by the motto “One Country, One Treatment.”
• National Health Mission(NHM) – The NHM provides funding through the State Program Implementation Plan(PIPs) at the state level towards the welfare of Hemophilia patients.
• The Drug Controller General of India – The DCGI has been prompt in providing the necessary NOC for acquiring donated clotting factor concentrates (CFCs) from WFH. This efficient support has enabled HFI to efficiently distribute aid to hospitals and medical colleges, significantly benefiting numerous hemophilia patients’ treatment and care.
• World Federation of Hemophilia (WFH) – HFI is affiliated to WFH as a member organization. WFH supports HFI in conducting advocacy workshops and providing free CFC of substantial quantity. WFH helps HFI in conducting various training programmes for doctors and youth groups. In 2015 the Humanitarian Aid Department of WFH initiated a project to donate CFC to Hemophilia Federation (India).
• Steel Authority of India Ltd.(SAIL) – The HEMOCAP (Hemophilia Care & Prevention) project was launched with the support of SAIL. Under this project, 39 P/CwH received 2000 ius of CFC as per necessity and requirement. SAIL also supported 100 P/CwH who contracted HIV-AIDS and hepatitis infections from wet blood products like Fresh Frozen Plasma (FFP) or Lyophilized Cryoprecipitate by providing free CFC worth Rs 10 lacs.
• Bharat Heavy Electricals Ltd.(BHEL) – ‘Heal A Soul’ is a collaborative effort between HFI and BHEL that commenced in 2012 to prevent disability, premature death, and blood-borne infections like HIV and Hepatitis among vulnerable P/CwH. The project had a budget of Rs 72 lacs for the provision of free CFC for these vulnerable groups. The first phase of this project ran between August 2012 and April 2014 and was successfully executed by HFI and BHEL’s CSR group, TBG –CSR. Following its success, ‘Heal a Soul II’ supported 720 P&CwHs from January 2015 to March 2017 with factor VIII & IX. BHEL extended support through a separate project named “Prevention is better than cure,” aimed at aiding 210 women and girls with carrier detection and prenatal diagnosis. ‘Heal a Soul – III’ in partnership with BHEL concluded in March 2020, after having provided factor VIII, factor IX, and FEBA to 100 P/Cwhs in India’s aspirational districts.
• Gas Authority of India Ltd.(Gail) – Gail sponsored the ‘A walk for Hemophilia’ walkathon in 2013, an awareness generation exercise that attracted nearly 3000 participants.
• Oil and Natural Gas Corporation (ONGC) – ONGC partnered with HFI to launch the transformative “Hemophiliacs Education and Transformation (HEAT)” project. This initiative aimed to empower 1000 children with Hemophilia (CwH), aged 5 to 18, living below the poverty line, by providing education opportunities. ONGC’s financial support for one year marked a significant milestone for the CwH community, offering a glimpse of hope for a brighter future. ONGC also sponsored “Prevention is better than Cure,” enabling Carrier Detection Tests (CD) and Prenatal Diagnosis (PND) for Hemophilic family members. HFI effectively executed both projects, paving the way for more support to C/PwH in subsequent years. ONGC’s project “Asha ki Kiran” aided 15 inhibitor P/CwHs by providing 2500 IUs each of FEIBA, showcasing their continued commitment to Hemophilia welfare.
• The Hans Foundation – The Hans Foundation partnered with HFI for integrated projects aiding P/CwH across India through Treatment, Education, and Awareness. The Awareness Project “CHETNA” focused on disseminating knowledge about Hemophilia via schools and colleges, covering 67 institutions with informational materials. The Education Project addressed the educational needs of Hemophilic children, enabling them to continue studies confidently, envisioning a brighter future. The Treatment Project provided vital medical assistance and emergency surgeries to economically disadvantaged P/CwH, improving their attendance in schools, extracurricular activities, and the overall well-being of both children and adults.
• Give India – Generous donations channeled through Give India greatly assist HFI in supplying life-saving CFC to PwH in critical situations, along with providing educational assistance to CwH.
• Takeda – Takeda sponsors various activities such as Hemophilia awareness programmes, advocacy programmes, CMEs, maintenance of the website, workshops and patients’ camps/events/activities. Additionally, they supply CFC at nominal rates for underprivileged patients.
• Danish Hemophilia Society (DHS) – In 1998, the DHS supported HFI on the “Living with Hemophilia in India” project. Ten chapters, namely Calcutta, Mumbai, Delhi, Chennai, Ahmedabad, Coimbatore, Hyderabad, Patna, Varanasi & Bhopal, were given support for identifying persons with Hemophilia and providing medical and diagnostic facilities and educating and training Medical / Paramedical personnel and patients in Hemophilia Care & Management. The project assisted the chapters in attaining self-sustenance.
• Hemophilia Society UK – Hemophilia Society UK supported the ‘Sponsor a Child’ treatment support project in which donors forwarded a 20 pound monthly donation to 85 children with Hemophilia (CwH) to ensure proper treatment and CFC for them, preventing them from disability and even death.
• Save One Life (SOL) USA – SOL supports an increasing number of children with hemophilia and their parents with education and medical expenses through generous donations, scholarships and income generation programs over the years. Presently, around 800
• Novo Nordisk Haemophilia Foundation – Over the last 15 years, NNHF has partnered with HFI for 12 projects, with 11 completed so far. An ongoing project named ‘Unify Hemophilia Federation India (HFI)’ in collaboration with NNHF focuses on capacity building and Key Person Training (KPT) for development of HFI chapters.

Musculoskeletal (India) Project – This was a high-impact project undertaken by HFI in collaboration with NNHF with the aim of training and capacity building for physiotherapists working with PwH in India. The inaugural National Musculoskeletal (MSK) Physiotherapy Workshop held on February 11 and 12, 2017, marked a significant milestone for physiotherapists specializing in Hemophilia care in India. The event aimed to discuss and enhance physiotherapy practices across the country. Dr. Paul McLaughlin from Royal Free Hospital, UK, shared insights on practice standards. Joint and muscle issues persist among primary prophylaxis-treated individuals, highlighting the need for proactive physiotherapy. This was a focus for the HFI-NNHF Musculoskeletal Project’s Phase 3 clinical trials. This initiative aimed to improve the quality of life for people with Hemophilia.

As part of Phase 3 for the MSK Project, dedicated physiotherapists from 15 Healthcare Centers across the country studied the Efficacy of Physiotherapy Treatment Protocols under the lead of Dr. Pamela Narayan, senior physiotherapist from Hyderabad. Physiotherapists trained under the project are now treating children and PwH in their local communities, hospitals and HFI chapters.