06/26/2018

This past 19 June, the Foundation co-organised a roundtable in Bamako addressing issues around health for people with albinism in Africa.

The event brought together institutional and healthcare entities and associations working in Mali to improve the health and care of those affected by this genetic disease.

Co-hosted with the Institut Français du Mali, the Solidarité pour l’Insertion des Albinos du Mali association, the Dermatology department of the Centre National d’Appui à la lutte contre la Maladie (Foundation partners ) and the French Embassy in Mali, over a hundred people attended this gathering: patients’ families with their children; representatives of all Malian patient associations; doctors (ophthalmologists, psychologists, paediatricians, researchers); NGOs and artists.

The family of young Ramata Diarra, murdered in Fana in mid-May 2018 because of her condition, also came to share their story. The institutions in attendance and the participants were able to show their support and solidarity.

The meeting, with Jean-Marie Milleliri, Regional Global Health Advisor at the French Embassy in Mali, at the helm, made it possible to learn about the work of Professor Ousmane Faye, Head of the Dermatology Department of the Centre National d’Appui à la lutte contre la Maladie, Vice-Dean of the Bamako Faculty of Medicine; Lalla Aicha Diakité, President of the Solidarité pour l’Insertion des Albinos du Mali association; and Amaury Bertaud, Health Project Manager in Mali for the Fondation Pierre Fabre.

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Raising awareness on the dangers of sun exposure

Despite improved international awareness of the social consequences of albinism in Africa, the health consequences, such as sunburn and skin cancer, receive less media coverage. Nevertheless, these dangers claim many victims. In sub-Saharan Africa, albinism is four to five times more prevalent than in the rest of the world and can affect as many as one in 1,500 people in some regions (e.g., Tanzania and Malawi). Albinism is responsible for extreme sensitivity to sunlight and those with the condition have a high risk of developing skin cancer. It is estimated, in Africa, that only 2% of people with albinism live to the age of 40.

This is why, since 2015, the Fondation Pierre Fabre has been investing in programmes designed to improve early detection of skin cancers and treat people with albinism in Mali, Tanzania and Malawi, work that will soon extend to Togo and Burkina Faso.

The conference was videotaped and will soon be available on the site.