Plea for the international community to take sickle cell disease into account<\/h1>\n<\/div><\/div><\/div><\/div><\/div><\/div>15\/06\/2022<\/strong><\/p>\nJOINT STATEMENT<\/h2>\n
On Wednesday, June 15, 2022, at the initiative of the Pierre Fabre Foundation, the second working meeting entitled “Sickle Cell Disease Africa Initiative” (SCAI) was held in Paris in the presence of institutional, medical, scientific and civil society representatives from twelve African countries (Burkina Faso, Burundi, Cameroon, Central African Republic, C\u00f4te d’Ivoire, Ghana, Republic of Guinea, Mali, Democratic Republic of Congo, Senegal, Tanzania and Togo) and Haiti.<\/p>\n
Sickle cell disease is the first genetic disease in the world that affects the majority of people in sub-Saharan Africa and was recognized by the United Nations as a public health problem in 2008. However, the lack of dedicated funding and the still timid commitment of public authorities and development partners have not made it possible to meet the basic needs of the population affected by this disease.<\/p>\n
After exchanging on the main advances, difficulties encountered and perspectives in the fight against sickle cell disease country by country since the first IDA meeting in March 2019, the participants wish to renew the following recommendations messages to their respective states and to the international community:<\/p>\n
\n- Promote the fight against sickle cell disease and its inclusion as a public health priority on the global health agenda by focusing on the coordination of the various actors involved in the field (national, pan-African and international coordination of policies as well as strategic plans to fight sickle cell disease<\/li>\n
- Promote the emergence and implementation of national strategic plans to fight sickle cell disease in each country, integrating the following priorities:\n
\n- Strengthen and systematize neonatal, early or targeted screening on a national scale<\/li>\n
- To continue the training of health professionals and associations fighting against the disease to generalize and decentralize diagnosis, medical care and psychosocial support for all patients<\/li>\n
- Update and carry out a reliable evaluation of the prevalence of the disease in each country<\/li>\n
- Support associations fighting against the disease in their development and their role in accompanying patients<\/li>\n<\/ul>\n<\/li>\n
- Strengthen research by setting up systematic and computerized data collection systems.<\/li>\n
- Establish reliable and sufficient supply channels to allow equitable access to hydroxyurea and other essential medicines.<\/li>\n
- To promote a better knowledge of the disease by the general population through the mobilization of institutional actors and civil society.<\/li>\n<\/ul>\n
Through this plea, the representatives of the thirteen countries present and the Pierre Fabre Foundation are alerting national and international representatives in global health to the urgent need to act in favor of the millions of sickle cell patients and their families.<\/p>\n
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SIGNATORIES<\/h2>\n
BABY Mounirou<\/strong>: Directeur G\u00e9n\u00e9ral du CRLD, Professeur d’h\u00e9matologie – Mali<\/p>\nBALANDYA Emmanuel<\/strong>: Senior Lecturer, Department of Physiology – MUHAS, Director, Postgraduate Studies \u2013 MUHAS Principal Investigator, SPARCO – Tanzania<\/p>\nBANAON Dramane<\/strong>: Coordonnateur National du Comit\u00e9 d’Initiative contre la Dr\u00e9panocytose au Burkina Faso<\/p>\nBELINGA Suzanne<\/strong>: Directrice G\u00e9n\u00e9rale Adjointe, Centre Pasteur du Cameroun<\/p>\nDELY-ST VICTOR Nora<\/strong>: Coordinatrice du projet d\u00e9pistage de l’an\u00e9mie falciforme, H\u00f4pital Saint Damien, Ha\u00efti<\/p>\nDIAGNE Ibrahima<\/strong>: Professeur titulaire de p\u00e9diatrie, Directeur du Centre de recherche et de prise en charge ambulatoire de la dr\u00e9panocytose de St Louis du S\u00e9n\u00e9gal<\/p>\nDIALLO Dapa<\/strong>: Professeur honoraire d’h\u00e9matologie – Mali<\/p>\nDIOP Saliou<\/strong>: Professeur titulaire en h\u00e9matologie clinique, Directeur du Centre National de Transfusion Sanguine du S\u00e9n\u00e9gal<\/p>\nDRAME Mamady<\/strong>: Directeur du centre SOS Dr\u00e9pno Guin\u00e9e de Conakry \u2013 Guin\u00e9e<\/p>\nEPOSSE Charlotte<\/strong>: M\u00e9decin P\u00e9diatre, Responsable du Centre de prise en charge de la dr\u00e9panocytose de l\u2019h\u00f4pital Laquintinie de Douala -Cameroun<\/p>\nGARRETTE B\u00e9atrice<\/strong>: Directrice G\u00e9n\u00e9rale de la Fondation Pierre Fabre – France<\/p>\nGIRUKWISHAKA Jean Bosco<\/strong>: Secr\u00e9taire Ex\u00e9cutif de l\u2019Office de la Premi\u00e8re Dame au Burundi<\/p>\nGUINDO Aldiouma<\/strong>: Directeur G\u00e9n\u00e9ral Adjoint du Centre de Recherche et de Lutte contre la dr\u00e9panocytose (CRLD) de Bamako – Mali<\/p>\nHAVYARIMANA Jean de Dieu<\/strong>: M\u00e9decin Directeur du Programme National de Lutte contre les maladies chroniques non transmissibles du Burundi<\/p>\nKITENGE Bobo<\/strong>: Coordinateur g\u00e9n\u00e9ral, Centre de Formation et d’Appui Sanitaire (CEFA\/Monkole) de Kinshasa \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\nKOFFI Gustave<\/strong>: Professeur d’h\u00e9matologie, Soci\u00e9t\u00e9 Ivoirienne d’H\u00e9matologie Immunologie Oncologie – Transfusion Sanguine de C\u00f4te d’Ivoire<\/p>\nLUKANU Philippe<\/strong>: Coordinateur Acad\u00e9mique, D\u00e9partement de Medecine de Famille et soins de sant\u00e9 primaires, SANRU \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\nMAGNANG H\u00e9zouw\u00e9<\/strong>: Directeur du Centre National de Recherche et de Soins aux Dr\u00e9panocytaires (CNRSD) de Lom\u00e9 – Togo<\/p>\nMBIYA Benoit<\/strong>: Directeur G\u00e9n\u00e9ral, Clinique P\u00e9diatrique de Mbujimayi \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\nNGUILELO Thelma Lorna<\/strong>: Directrice du Centre de Recherche et de Traitement de la Dr\u00e9panocytose de Bangui \u2013 R\u00e9publique centrafricaine<\/p>\nOPPONG Samuel<\/strong>: Lecturer, University of Ghana Medical School – Ghana<\/p>\nOUEDRAOGO Chantal<\/strong>: Point focal Dr\u00e9panocytose \u00e0 la Direction de la Pr\u00e9vention et du Contr\u00f4le des maladies non transmissibles au minist\u00e8re de la Sant\u00e9 du Burkina Faso<\/p>\nPRZYBYLSKI Christophe<\/strong>: Directeur Scientifique Fondation Pierre Fabre – France<\/p>\nTSHILOLO L\u00e9on<\/strong>: Professeur de p\u00e9diatrie et d’h\u00e9matologie, Directeur du Centre de Formation et d’appui sanitaire Monkol\u00e9 \u2013 R\u00e9publique D\u00e9mocratique Congo<\/p>\nZOURE Emmanuelle<\/strong>: Directrice, Direction de la pr\u00e9vention et du contr\u00f4le des maladies non transmissibles (DPCM)\/ (DGSP) Minist\u00e8re de la sant\u00e9, Burkina Faso<\/p>\n<\/div>
15\/06\/2022<\/strong><\/p>\n On Wednesday, June 15, 2022, at the initiative of the Pierre Fabre Foundation, the second working meeting entitled “Sickle Cell Disease Africa Initiative” (SCAI) was held in Paris in the presence of institutional, medical, scientific and civil society representatives from twelve African countries (Burkina Faso, Burundi, Cameroon, Central African Republic, C\u00f4te d’Ivoire, Ghana, Republic of Guinea, Mali, Democratic Republic of Congo, Senegal, Tanzania and Togo) and Haiti.<\/p>\n Sickle cell disease is the first genetic disease in the world that affects the majority of people in sub-Saharan Africa and was recognized by the United Nations as a public health problem in 2008. However, the lack of dedicated funding and the still timid commitment of public authorities and development partners have not made it possible to meet the basic needs of the population affected by this disease.<\/p>\n After exchanging on the main advances, difficulties encountered and perspectives in the fight against sickle cell disease country by country since the first IDA meeting in March 2019, the participants wish to renew the following recommendations messages to their respective states and to the international community:<\/p>\n Through this plea, the representatives of the thirteen countries present and the Pierre Fabre Foundation are alerting national and international representatives in global health to the urgent need to act in favor of the millions of sickle cell patients and their families.<\/p>\n BABY Mounirou<\/strong>: Directeur G\u00e9n\u00e9ral du CRLD, Professeur d’h\u00e9matologie – Mali<\/p>\n BALANDYA Emmanuel<\/strong>: Senior Lecturer, Department of Physiology – MUHAS, Director, Postgraduate Studies \u2013 MUHAS Principal Investigator, SPARCO – Tanzania<\/p>\n BANAON Dramane<\/strong>: Coordonnateur National du Comit\u00e9 d’Initiative contre la Dr\u00e9panocytose au Burkina Faso<\/p>\n BELINGA Suzanne<\/strong>: Directrice G\u00e9n\u00e9rale Adjointe, Centre Pasteur du Cameroun<\/p>\n DELY-ST VICTOR Nora<\/strong>: Coordinatrice du projet d\u00e9pistage de l’an\u00e9mie falciforme, H\u00f4pital Saint Damien, Ha\u00efti<\/p>\n DIAGNE Ibrahima<\/strong>: Professeur titulaire de p\u00e9diatrie, Directeur du Centre de recherche et de prise en charge ambulatoire de la dr\u00e9panocytose de St Louis du S\u00e9n\u00e9gal<\/p>\n DIALLO Dapa<\/strong>: Professeur honoraire d’h\u00e9matologie – Mali<\/p>\n DIOP Saliou<\/strong>: Professeur titulaire en h\u00e9matologie clinique, Directeur du Centre National de Transfusion Sanguine du S\u00e9n\u00e9gal<\/p>\n DRAME Mamady<\/strong>: Directeur du centre SOS Dr\u00e9pno Guin\u00e9e de Conakry \u2013 Guin\u00e9e<\/p>\n EPOSSE Charlotte<\/strong>: M\u00e9decin P\u00e9diatre, Responsable du Centre de prise en charge de la dr\u00e9panocytose de l\u2019h\u00f4pital Laquintinie de Douala -Cameroun<\/p>\n GARRETTE B\u00e9atrice<\/strong>: Directrice G\u00e9n\u00e9rale de la Fondation Pierre Fabre – France<\/p>\n GIRUKWISHAKA Jean Bosco<\/strong>: Secr\u00e9taire Ex\u00e9cutif de l\u2019Office de la Premi\u00e8re Dame au Burundi<\/p>\n GUINDO Aldiouma<\/strong>: Directeur G\u00e9n\u00e9ral Adjoint du Centre de Recherche et de Lutte contre la dr\u00e9panocytose (CRLD) de Bamako – Mali<\/p>\n HAVYARIMANA Jean de Dieu<\/strong>: M\u00e9decin Directeur du Programme National de Lutte contre les maladies chroniques non transmissibles du Burundi<\/p>\n KITENGE Bobo<\/strong>: Coordinateur g\u00e9n\u00e9ral, Centre de Formation et d’Appui Sanitaire (CEFA\/Monkole) de Kinshasa \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\n KOFFI Gustave<\/strong>: Professeur d’h\u00e9matologie, Soci\u00e9t\u00e9 Ivoirienne d’H\u00e9matologie Immunologie Oncologie – Transfusion Sanguine de C\u00f4te d’Ivoire<\/p>\n LUKANU Philippe<\/strong>: Coordinateur Acad\u00e9mique, D\u00e9partement de Medecine de Famille et soins de sant\u00e9 primaires, SANRU \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\n MAGNANG H\u00e9zouw\u00e9<\/strong>: Directeur du Centre National de Recherche et de Soins aux Dr\u00e9panocytaires (CNRSD) de Lom\u00e9 – Togo<\/p>\n MBIYA Benoit<\/strong>: Directeur G\u00e9n\u00e9ral, Clinique P\u00e9diatrique de Mbujimayi \u2013 R\u00e9publique D\u00e9mocratique du Congo<\/p>\n NGUILELO Thelma Lorna<\/strong>: Directrice du Centre de Recherche et de Traitement de la Dr\u00e9panocytose de Bangui \u2013 R\u00e9publique centrafricaine<\/p>\n OPPONG Samuel<\/strong>: Lecturer, University of Ghana Medical School – Ghana<\/p>\n OUEDRAOGO Chantal<\/strong>: Point focal Dr\u00e9panocytose \u00e0 la Direction de la Pr\u00e9vention et du Contr\u00f4le des maladies non transmissibles au minist\u00e8re de la Sant\u00e9 du Burkina Faso<\/p>\n PRZYBYLSKI Christophe<\/strong>: Directeur Scientifique Fondation Pierre Fabre – France<\/p>\n TSHILOLO L\u00e9on<\/strong>: Professeur de p\u00e9diatrie et d’h\u00e9matologie, Directeur du Centre de Formation et d’appui sanitaire Monkol\u00e9 \u2013 R\u00e9publique D\u00e9mocratique Congo<\/p>\n ZOURE Emmanuelle<\/strong>: Directrice, Direction de la pr\u00e9vention et du contr\u00f4le des maladies non transmissibles (DPCM)\/ (DGSP) Minist\u00e8re de la sant\u00e9, Burkina Faso<\/p>\n<\/div>JOINT STATEMENT<\/h2>\n
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SIGNATORIES<\/h2>\n