The Monegasque Cooperation held a major workshop in Niamey, Niger, from April 3 to 6, bringing together five patient associations, members of the Sickle Cell Disease West Africa-Madagascar network.
Participants were able to share their experiences and receive training on strategies and techniques to obtain further funding. Discussions also focused on the support of the associations for the dissemination of informative materials targeting the harmonised management of sickle cell disease, funded by Monaco, which will be launched on June 19 during the World Day dedicated to the disease.
On the sidelines, the associations visited the National Centre for the Control of Sickle Cell Disease, supported by the Prince’s Government, which monitors nearly 6,000 patients with the disease, 40 percent of whom are children.
Finally, the associations, accompanied by Mrs. Anne Poyard-Vatrican, deputy director of the International Cooperation department, were received at the National Assembly of Niger by the deputies of the Social Commission. The delegation was also welcomed, in a private audience, by the Minister of Public Health, Dr Idi Illiassou Mainassara.
The network “Sickle Cell Disease West Africa-Madagascar”, created in 2013 by the Monegasque Cooperation, brings together doctors and representatives of patient associations from six countries – Senegal, Burkina Faso, Mali, Mauritania, Niger, and Madagascar. It aims to better manage the disease and make it known to a wider audience.
Sickle cell disease, a hereditary disease of hemoglobin, is the biggest genetic disease in the world: 50 million people carry the sickle cell trait, according to the World Health Organisation, and it is estimated that one out of two children infected with the disease die before the age of five if they do not receive care.