NMO profile: the Ivory Coast (Hémophilie et autres maladies du sang de Cote d’Ivoire)

NMO profile: the Ivory Coast

National member organizations (NMOs) are the heartbeat of the World Federation of Hemophilia (WFH). The WFH works in close collaboration with NMOs to provide them with support tailored to their realities to help them increase the level of care for the people with bleeding disorders (PWBDs) in their countries. Every few weeks we will be profiling an NMO on the WFH News page, showcasing the work that they are doing, the challenges they are facing, and the difference they are making in their communities. Today, we look at the NMO in the Ivory Coast, the Hémophilie et autres maladies du sang de Cote d’Ivoire (ONG IHMS-CI).

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About the NMO

NMO nameHémophilie et autres Maladies de la Coagulation du Sang en Côte d’Ivoire (ONG IHMS-CI)
Location Abidjan, Côte d’Ivoire
Founding date 2007
PWBDs served186
Websitewww.facebook.com/Ihmsci

Background

The Hémophilie et autres Maladies de la Coagulation du Sang en Côte d’Ivoire (ONG IHMS-CI) was founded in 2007. There are several WFH initiatives active in the Ivory Coast, including country programs, the WFH Path to Access to Care and Treatment (PACT) Program, the WFH Humanitarian Aid Program and a pilot project for the identification of PWBDs. Completed WFH Twinning Program initiatives—a Hemophilia Organization Twinning (HOT) and a Hemophilia Treatment Centre (HTC) Twinning between the Ivory Coast and Belgium—have also helped to improve care in the country.

Q&A with the NMO

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

What is the mission of your NMO?

Our mission is to ensure that all people living with hemophilia in Côte d’Ivoire have access to quality care and treatment. Through patient support, training initiatives, and therapeutic education, we work to improve awareness and strengthen care for people living with bleeding disorders across the country.

What services do you offer to your community?

We provide patient guidance, educational activities, and therapeutic training to help individuals and families better understand hemophilia and its management. These initiatives also help strengthen collaboration between patients, healthcare providers, and the wider community.

What are the challenges your NMO faces?

One of our greatest challenges remains access to treatment products and specialized care. Diagnostic capacity is still limited due to the lack of reagents in public hospitals and low awareness of hemophilia among healthcare providers and the general population. In addition, only two treatment centres currently serve the entire country, making access difficult for many families. To address these issues, we continue advocacy efforts with health authorities and private partners to improve diagnostic resources and support the creation of new treatment centres.

Why did your NMO join the WFH, and how has your experience been?

Since joining the World Federation of Hemophilia (WFH) in 2012, we have benefited from training opportunities, international collaboration, and donated coagulation factor concentrates. Our experience with the WFH has been both positive and highly instructive, helping improve the quality of life of diagnosed patients in Côte d’Ivoire.

Which WFH program has been the most impactful for your community?

The WFH Twinning Program, the outreach pilot project and Country Program have had a particularly strong impact on our community by helping increase number of PWBS, strengthen local capacity and improve care delivery.

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

Over the years, we have seen significant progress in awareness and care for people with bleeding disorders. Hemophilia is now better understood by patients and the general population, while health authorities are showing greater interest in supporting care initiatives. One of our major advocacy successes was helping secure the integration of hemophilia into Côte d’Ivoire’s National Program for Non-Communicable Diseases. We also achieved a major increase in the number of patients with severe hemophilia A receiving prophylaxis treatment through state support.

Have you been successful advocating with the government?

Yes. Through advocacy efforts and meetings with health authorities, we successfully helped secure the integration of hemophilia into Côte d’Ivoire’s National Program for Non-Communicable Diseases. This achievement followed close collaboration with the clinical hematology department at CHU de Yopougon and national health officials. The experience highlighted the importance of strong partnerships, updated data, and sustained dialogue with decision-makers.

What was your main highlight/achievement of the last year?

One of our greatest achievements was the increase in the number of patients with severe hemophilia A receiving prophylaxis treatment through state support, rising from 33 patients in 2023 to 153 in 2024. This progress was made possible through continued advocacy with health authorities and strengthened collaboration with partners.

Would you like to highlight any of your team members?

This is the story of Koffi Gnamien Adam Désiré, a 28-year old man with severe hemophilia A:

My life has been marked since childhood by pain, frequent bleeding, missed school days, stigma, and ridicule. Despite these challenges, I have always refused to let my condition define me and have pursued my education with determination, supported by my family and friends.

Thanks to WFH programs, such as the WFH Twinning Program, country program, and the WFH PACT Program, and the commitment of the NMO, I was able to better understand my condition—which was often attributed to witchcraft or an evil act—and receive appropriate care. Support from the government of Côte d’Ivoire also enabled me to access prophylactic treatment. All of this has helped improve my quality of life.

I sincerely hope that access to care for all will become a reality through increased awareness and diagnosis.

How do you envision the future of the bleeding disorder community in your country and globally?

We see promising opportunities ahead, including increasing the procurement of treatment products such as non-factor replacement therapy by the government of Côte d’Ivoire and continued improvements in the quality and accessibility of care. We remain hopeful for a future where all people living with hemophilia can access timely diagnosis, effective treatment, and better quality of life.

Find out more about other NMOs

To read about the way the WFH and NMOs collaborate to make a difference in local bleeding disorders communities, please read “National member organizations: the heartbeat of the WFH” here.

To read more stories in this series, please click on one of the links below.

NMOCountryArticle
Federação Brasileira de HemofiliaBrazilClick here
Asociación Costarricense de HemofiliaCosta RicaClick here
Fundación Apoyo al HemofílicoDominican RepublicClick here
The Haemophilia Society (THS)U.K.Click here
National Hemophilia Network of JapanJapanClick here
Kenya Haemophilia Association (KHA)KenyaClick here
Kyrgyz Hemophilia Society Community of Handicapped-Hemophiliacs of the Republic of KyrgyzstanKyrgyzstanClick here
Libyan Association for HemophiliaLibyaClick here
Hemophilia Society of MalaysiaMalaysiaClick here
Haemophilia Association of MauritiusMauritiusClick here
Federación de Hemofilia de la República MexicanaMexicoClick here
Haemophilia Foundation of Nigeria (HFN)NigeriaClick here
Rwanda Fraternity Against HemophiliaRwandaClick here
Syrian Hemophilia SocietySyriaClick here
Haemophilia Society of Tanzania (HST)TanzaniaClick here
Association Tunisienne de L’Hemophilie (ATH)TunisiaClick here
Haemophilia Foundation of Zambia (HFZ)ZambiaClick here

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