NMO profile: the Hemophilia Society of Bangladesh

The following answers from the NMO have been edited for clarity.

What is the mission of your NMO?

At the Hemophilia Society of Bangladesh (HSB), we dream of a future where every person with a bleeding disorder can live a healthy, productive, and dignified life. Our mission is to improve access to diagnosis, treatment, education, and comprehensive care. We do this through patient support, awareness programs, advocacy, and strong partnerships with healthcare professionals, government institutions, and the WFH.

What services do you offer to your community?

We offer our community awareness campaigns, patient and family educational meetings, primary care counseling, critical care consultations, financial support for underprivileged groups, and the distribution of treatment products donated by the WFH.

What are the challenges your NMO faces?

Many people with bleeding disorders in Bangladesh remain undiagnosed or are diagnosed very late in life. Access to specialized care is often limited outside major cities, and treatment products are not always available when needed. Public awareness is also low, which delays recognition of symptoms. For many families, the financial burden of treatment remains a major challenge, making access to quality care difficult.

How would you describe your experience collaborating with the WFH?

Our partnership with the WFH has been truly transformative. Over the years, the WFH has supported us through training, leadership development, advocacy guidance, humanitarian aid, and technical expertise. This collaboration has strengthened our organization, improved patient care, and helped us build productive relationships with healthcare providers and policymakers. Most importantly, it has created new opportunities and hope for people living with bleeding disorders in Bangladesh.

Which WFH programs have been the most impactful for your community?

The WFH Humanitarian Aid Program has been life-changing for many patients by providing access to treatment they otherwise could not afford. The WFH PACT Program has strengthened diagnosis, advocacy, capacity building, and comprehensive care. Other initiatives—such as the WFH GAP Program [a predecessor to the WFH PACT Program], the WFH Cornerstone Initiative, the WFH Twinning Program, and many others—have also played an important role in improving awareness, education, healthcare professional training, and treatment outcomes. Together, these programs have transformed hemophilia care in Bangladesh.

How has your NMO improved care for PWBDs in your country?

Over the years, we have built a stronger national patient network and registry, increased awareness about bleeding disorders, and improved access to diagnosis and treatment. More healthcare professionals are now trained to manage these conditions, and collaboration with government institutions has grown significantly. With continued support from the WFH, Bangladesh has made meaningful progress toward more comprehensive, sustainable, and patient-centred care.

Have you been successful advocating with the government?

Advocacy has always been a core part of our work. We regularly engage with the Directorate General of Health Service (DGHS), the Ministry of Health, public hospitals, and policymakers to improve diagnosis, treatment access, and patient care. Our efforts focus on increasing government support, ensuring greater treatment availability, and integrating bleeding disorders into national health priorities. The guidance and resources provided by the WFH have greatly strengthened our advocacy efforts.

What was your main achievement of the last year?

One of our proudest achievements was contributing to the development of Bangladesh’s National Hemophilia Guidelines, which were adopted by the DGHS. We also expanded access to treatment, strengthened advocacy efforts, conducted awareness and training programs, and increased collaboration with government stakeholders. Through ongoing PACT activities and improved patient support services, we were able to reach and support more people living with bleeding disorders.

What will the main challenges be for your community in the coming years?

Our biggest challenge will be ensuring sustainable access to treatment for all patients across the country. We also need to expand comprehensive care services, strengthen early diagnosis, and build the capacity of healthcare professionals. As more patients are identified, greater government commitment and investment will be essential to ensure that no one is left behind and that treatment remains consistently available.

Would you like to highlight any of your team members, volunteers, board members, or employees?

I would like to recognize the dedication of our volunteers, board members, parents, and healthcare professionals who work tirelessly for the bleeding disorders community in Bangladesh. I would especially like to acknowledge our Vice President, Mohammed Saiful Islam, whose commitment and leadership have contributed significantly to our progress. Together with our entire team, he continues to work passionately to improve the quality of life of people living with bleeding disorders throughout Bangladesh.

Would you like to share a story of a person with a bleeding disorder who benefited from your collaboration with the WFH?

Rafiqul Islam, 31, from a rural district of Bangladesh, suffered frequent joint bleeds for years and often missed school because of pain and disability. Through the WFH Humanitarian Aid Program, he gained access to clotting factor treatment and proper medical care. As his bleeding episodes decreased, he was able to return to school, participate in daily activities, and regain confidence. Today, he leads a much more active life and gives hope to other families facing similar challenges.

Are you working with other NMOs in your region? If so, how?

We maintain regular contact with several NMOs across the Asia-Pacific region, mainly through WFH meetings, social media, and informal exchanges. While we would like to establish more structured knowledge-sharing opportunities in the future, these interactions already allow us to learn, exchange experiences, and explore successful advocacy and patient-care initiatives that can benefit our community.

What advice would you give other NMOs?

Stay patient, persistent, and focused on your long-term vision. Meaningful change takes time, but every small success matters. Build strong partnerships with patients, healthcare professionals, government agencies, and the WFH. Invest in leadership development, patient education, and advocacy, and always keep the needs and voices of people with bleeding disorders at the centre of your work.

Do you have any message for the global bleeding disorders community?

Our journey reminds us that progress is possible when we work together. Through collaboration, advocacy, and shared learning, we can continue expanding access to diagnosis, treatment, and care around the world.

On behalf of the Hemophilia Society of Bangladesh, I would like to extend heartfelt thanks to the WFH. The federation’s unwavering support, responsiveness, and belief in our mission have empowered us to overcome challenges and achieve meaningful progress.