People with bleeding disorders in the Republic of Congo face many challenges. Not only is access to diagnosis and treatment limited or even non-existent, but some bleeding disorder pathologies are not even recognized by official authorities. Jean Paul Léonard Ngoukoulou is a bleeding disorder patient and the president of the Association Congolaise des Hémophiles (ACH). He feels that despite the efforts made by his patient organization, treatment and care for people with bleeding disorders (PWBD) in the Republic of the Congo continues to have challenges.
It was this difficult situation for the Congolese bleeding disorders community that sparked the birth of the ACH. Ngoukoulou and a group of volunteers officially founded the association in 2017 with nearly 30 registered members. Since then, there has been improvement in the medical care of people living with hemophilia in the country. These improvements were made possible by capacity building activities done in collaboration with patients groups and healthcare professionals, and factor donations provided by the World Federation of Hemophilia (WFH) Humanitarian Aid Program. Currently, 97 people with bleeding disorders have been identified in the country.
The Alliance franco-africaine pour le traitement de l’hémophilie (Afath) played a part in the successes of the ACH. Based in Paris, France, Afath works closely with bleeding disorders organizations in francophone Africa. They provided direct support to the ACH to help the organization establish itself, and also played a part in the ACH being accredited as an associate national member organization (NMO). The ACH is now one of 147 NMOs around the world.
Ngoukoulou says that becoming an associate NMO is a huge step for his organization. “We wanted to become members of the WFH because we want the bleeding disorder community in the Republic of Congo to benefit from WFH programs, education and government advocacy. We also want to continue working with the WFH Twinning Program and the WFH Humanitarian Aid Program.”
The WFH looks forward to working with the Association Congolaise des Hémophiles to improve the quality of life of individuals living with hemophilia and other bleeding disorders in the Republic of the Congo. On behalf of the global bleeding disorders community, welcome ACH!