Publications

Patient Support

Since its inception, HFI has been undertaking a wide range of time bound and open endedProjects and programs Aimed at making a lasting impact on the lives of PWH . These innovative projects Are aimed to provide quality treatment education and rehabilitation support all with the core intention of Offering a life of dignity and empowerment to people within the Hemophilia community.

Some of our projects include:

• Carrier detection/prenatal diagnosis – Given the importance of early intervention, HFI plays a key role in spearheading Carrier detection and prenatal diagnosis programs. Families are offered genetic testing facilities along with counseling, empowering them to make informed decisions that prevent Hemophilia.
• Treatment support with CFC – Treatment support programs are designed to ensure consistent access to Anti-hemophilic Factor for PwH, facilitating optimal management and a better quality of life.
• Support for surgeries – HFI’s Support for Surgeries program facilitates crucial surgical procedures for disabled PwHs that promote their overall well-being.
• Support for Inhibitor patients – HFI provides specialized programs tailored to support inhibitor patients and provide life-saving support.
• Financial empowerment through microenterprise grounds – Being committed to enhancing financial independence and fostering economic stability, HFI facilitates funding for small businesses that empower families with Hemophilia to become self-reliant.
• Educational support through sponsorships and scholarships – By providing scholarships and sponsorships to young individuals with Hemophilia, HFI aims to foster academic aspirations in these individuals and support them in earning respectability and livelihood.
• Key Person Training and Capacity Building Workshops – Recognizing the importance of skills leaders, HFI conducts these workshops to equip chapter key persons with the expertise and knowledge to drive change within their communities.
• Communication workshops – HFI’s communication workshops empower individuals with the tools to effectively communicate their needs and concerns, ensuring that they become successful advocates for themselves and their communities.

Special Needs Cell

Established in 1993 under the leadership of Air Marshal (Retd.) S. Chand AVSM, the HFI Special Needs Cell was created to provide assistance to people with hemophilia (PWH) afflicted by blood-borne infections such as HIV and HCV. Managed by HFI, the cell aims to offer educational and financial aid to Hemophiliacs living with HIV, Hepatitis B, and Hepatitis C. Over the years, its management transitioned through Mr. Anil Lalwani, Mr. Rashid Lilani, and currently, tp Dr. Sudhir Kulkarni.

The cell has set guidelines, in consultation with HFI Medical Advisory Board (MAB), to provide support to PwH who are infected with HIV. The advice of the MAB is especially significant to those infected by HCV and for those who develop inhibitors.

The following support is available to PWH who have tested HIV positive:

• Free CFC whenever it is available.
• Reimbursement of medical bills for drugs to treat and prevent opportunistic infections.
• Reimbursement of up to 50% cost of AntiRetroviral Therapy (ART) drugs depending on the economic condition of the family. This support is available to patients whose CD4 cell count is near or below 200.

Any PwH wishing to avail this support may send an email to .

Youth Manual

The Youth Manual of Hemophilia Federation India (HFI) serves as a comprehensive guide designed to empower and educate young individuals affected by hemophilia. This manual provides valuable insights into managing the challenges associated with hemophilia, offering practical advice on self-care, treatment options, and lifestyle adaptation. It aims to foster a sense of community and resilience among the youth by sharing experiences and highlighting the importance of education, awareness, and advocacy. Through its informative content, the Youth Manual becomes a crucial tool in equipping young individuals with the knowledge and skills necessary to navigate life with hemophilia confidently, promoting a holistic approach to well-being.

E-Policy

The Youth Manual of Hemophilia Federation India (HFI) serves as a comprehensive guide designed to empower and educate young individuals affected by hemophilia. This manual provides valuable insights into managing the challenges associated with hemophilia, offering practical advice on self-care, treatment options, and lifestyle adaptation. It aims to foster a sense of community and resilience among the youth by sharing experiences and highlighting the importance of education, awareness, and advocacy. Through its informative content, the Youth Manual becomes a crucial tool in equipping young individuals with the knowledge and skills necessary to navigate life with hemophilia confidently, promoting a holistic approach to well-being.