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 LISTEN TO OUR PODCAST on sickle-cell disease with Professors Gil Tchernia, haematologist, Marc Gentilini, physician specialising in infectious and tropical diseases, and Dapa Diallo, haematologist in Mali. COMBATING SICKLE-CELL DISEASE MULTI-LEVEL ACTION in fighting the disease Over the course of its work, the Fondation Pierre Fabre has established itself as one of the world’s key actors in the fight against sickle-cell disease in the Global South. Its comprehensive approach includes early detection, treatment, healthcare personnel training and community awareness. The Foundation also invests in research and acts as a voice for those with the disease in communicating with international political figures and decision-makers. Faced with the urgent need to act on behalf of the millions with the disease, the Fondation Pierre Fabre has embarked in advocacy work: on 26 March 2019, at the end of the African Sickle-cell disease Initiative meeting, eleven African and Indian Ocean countries adopted a joint declaration calling for sickle-cell disease to be given greater weight in the global health agenda. This initiative will be renewed and extended to other countries. SUPPORTING FIELD INITIATIVES In Mali, the Research Centre to Combat Sickle-cell Disease (CRLD) continues decentralising treatment in the rural areas of the Kayes, Sikasso and Ségou regions (the CRLD’s creation and operation have been covered by a partnership between the Foundation and Mali’s Ministry of Health since 2006). The Foundation has temporarily assigned a young project manager to help establish a data-collection unit (see interview opposite). In Burkina Faso, it has been collaborating with the Sickle-cell Disease Initiative Committee in Burkina (CID/B) since 2014, helping arrange neonatal screening in three treatment centres and opening two information and awareness centres. In 2020, at the end of this support mission, a broader project will be introduced to support the Ministry of Health in implementing a national policy to combat sickle-cell disease. The multi-country support project (Cameroon, Congo- Brazzaville, Madagascar, DRC, Côte d’Ivoire), part of a partnership with the European Institute for Cooperation and Development (IECD), continued in 2019. To ensure activities remain sustainable, the structuring of advocacy actions has intensified. In the DRC, the second-most-impacted country after Nigeria, the Foundation will support these activities being incorporated into the national health policy. In Haiti, despite the period of unrest the country has been experiencing since early 2019, the early- detection pilot project conducted by the Saint-Damien paediatric hospital has been maintained. In 2020, it will be implemented in two Port-au-Prince teaching hospitals. Lastly, in Guinea, a new project was introduced in 2019 to support the Centre to Combat Sickle-cell Disease in Conakry and in partnership with the SOS Drépanocytaires Guinée non-profit organisation.  RESEARCH PROGRAMMES  IMPAS study: in collaboration with Cameroon’s Centre Pasteur: Impact of the sickle-cell trait on the transmission of malaria in Cameroon (recruitment of 5,000 persons). MIDAS study: in collaboration with the INSERM Unit 970: Infant and child mortality attributable to sickle-cell disease in five sub-Saharan African countries (sample of over 8,000 children). Fondation Pierre Fabre – 24 

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