Symposiums

25-27 mai 2016

Drépanocytose et transfusion sanguine.

More conference details coming soon. For any questions, please contact : RakotoAlson Aimée Olivat, Présidente du Comité d’Organisation, Pascale Jeannot, Présidente Fondatrice ONG LCDM SOLIMAD info@drepanocytose-madagascar.org, Léon Tshilolo, REDAC President, at cefacongo@gmail.com

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Léon Tshilolo, MD PhD

This international symposium on sickle cell disease in Central Africa organized by REDAC occurs every 2 years in a chosen country, however I feel this year’s 6th conference in Uganda is a unique and special one where several activities are taking place among which is the ‘Kampala Declaration’.

Therefore owing to the above fact, I gladly wish to welcome you all our dear guests and participants in your respective capacities. Thank you very much for honouring our invitation to this conference as we advance for more realistic solutions towards the Sickle cell challenge. In a special way, I also wish to thank the Republic of Uganda for accepting to host this year’s international symposium and for all the efforts invested towards organizing this conference.

REDAC is a French abbreviation standing for “Reseau d’Etude sur la Drépanocytose en Afrique Centrale” (Central Africa Network of Sickle Cell Disease Study) and it is basically operating in Central Africa. The REDAC conception has been made in Brazil and it was born in Kinshasa in May 2010 after two years of quiet pregnancy...

The mission of REDAC is to develop the collaboration between the concerned countries in order to promote the struggle against sickle cell disease; to develop research and cooperative activities between countries members and the scope of the association’s activities is in the countries namely Angola, Burundi, Cameroon, Gabon, Equatorial Guinea, Kenya, Uganda, Central African Republic, Republic of Congo, Democratic Republic of Congo, Zambia, Rwanda, South Sudan, Chad and Tanzania.

Our leitmotiv is: actions are better than good intentions!

This bi-annual conference is a platform through which the objectives of REDAC like exchange and dissemination of knowledge about sickle cell disease amongst member countries is achieved in the urge to reduce the disease burden in the region. We plan to purchase the WHO.

In this year’s conference, we look forward to coming up with new interventions towards solving a few challenges regarding sickle cell disease and I wish you a great time as you participate and learn from the conference.


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Françoise Bernaudin, MD

Centre Hospitalier Intercommunal, Creteil, France

Dr.Bernaudin is board-certified in Pediatrics and PediatricHematology. She has directed until December 2014 the Pediatric Sickle Cell Reference Center at the Créteil- Intercommunal Hospital (Paris XII-Créteil University, France) that follows 650 pediatric patients with sickle cell disease (SCD) and works as clinical researcher in this center. Dr Bernaudin joined the SCD program of Sainte-Justine in Montréal, Canada, as an Invited Professor in 2002- 2003. Dr Bernaudin is a member of the French Society of Pediatric Hematology-Immunology (SHIP), the French Society of Hematology (SFH) and the American Society of Hematology (ASH). She is a member of the Board of the French Society of Stem Cell Transplantation and Cellular Therapy (SFGM-TC). Her research interests include the epidemiology and treatment of cerebral vasculopathy in SCD and the role of hematopoietic stem-cell transplantation (HSCT) in the management of this disease. She has participated in the Silent Infarct Transfusion Trial (SITT) (DeBaun, M.,PI, NIH NINDS 5U01NS042804). She is the principal investigator on a French national study evaluating early geno-identical stem cell transplantation in patients with abnormal velocities on Transcranial Doppler (“DrepaGreffe” ClinicalTrials.gov: NCT 01340404).

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Marina Cavazzana, MD, PhD

Hôpital Necker – Enfants Malades, Centre d’Investigation Clinique Hôpital Necker – Enfants Malades, Institut Imagine, Paris, France

Marina Cavazzanais a paediatrician, Professor of Haematology since 2000, Director of the Department of Biotherapyat Hospital Necker, University Paris Descartes. She is the Director of the Inserm / Assistance Publique - Hôpitaux de Paris GHU Ouest Biotherapy Clinical Investigation Center and leads the research team #6 in Pr. Fischer’s Inserm Unit 768, Imagine Foundation.

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Yves Colin Aronovicz, PhD

CInserm U1134, Université Paris Diderot, Sorbonne Paris-Cité, Institut National de la Transfusion Sanguine Centre National de la Recherche Scientifique Paris, France

Yves Colin Aronovicz est Directeur de Recherche au Centre National de la Recherche Scientifique.

Il dirige l’unité mixte de recherche UMR_S1134 “Biologie Intégrée du Globule Rouge” de l’Inserm et de l’Université Paris Diderot. Il est également responsible du “Département de Recherche Biologique sur le Globule Rouge” de l’Institut National de la Transfusion Sanguine à Paris.

Ses domaines de recherche incluent des approches biochimiques, génétiques, et fonctionnelles des protéines membranaires porteuses d’antigènes de groupes sanguins et leur implication dans la physiologie des globules rouges normaux et pathologiques. Il a en particulier élucidé les bases moléculaires des phénotypes Rh-positif et Rh-négatif ainsi que la base génétique du phénotype Duffy-nul qui confère une résistance complète à Plasmodium vivaxà une grande majorité des africains ou des descendants d’africains. Ses travaux ont débouché sur des applications pour la sécurité transfusionnelle comme le génotypage des groupes sanguins Rh, Duffy, Luthéran, …et l’optimisation de la conservation des CGR.

Ses travaux sur le système Rhésus avec le développement de test de diagnostics anténataux de la maladie hémolytique du nouveau né lui ont valu d’être Lauréat du prix Jean Julliard décerné par la Société Internationale de Transfusion Sanguine.

Il est auteur ou co-auteur de 150 articles scientifiques.

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Patrick Ducoroy, PhD

BIOMANEO SAS, Université de Bourgogne , Dijon, France

Dr. P. Ducoroy is CEO of BIOMANEO SAS. The objective of BIOMANEO SAS is to design and market, on an international scale, innovative medical analysis kits based on the accurate analysis of proteins by mass spectrometry for screening and diagnosis.

The first application targeted by BIOMANEO SAS is the screening of the Sickle CellDisease (SCD).

In 2001, P. Ducoroy obtained his PhD in Dijon and then underwent a postdoctoral position stay at ESPCI Paris TEch (2002). 2003-2005, he worked as Proteomic Researcher in the investigational Biology Department of the Solvay Pharmaceuticals Company. Since 2005, he was employed by the CHU/university of Dijon to set up a clinical proteomic platform focused on the research of biomarkers.

During 10 years, P Ducoroy managed a team whose expertise covers the areas of proteomics research, the use of SM in hospital routine, biostatistics - bioinformatics analysis and the instrumentation dedicated at a better characterization of protein complexes in biological samples.

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Jacques Elion, MD, PhD

Inserm U1134, Université Paris Diderot, Sorbonne Paris-Cité, laboratoire d’Excellence sur le Globule Rouge (GR-Ex) et Institut National de la Transfusion Sanguine, Paris, France

Le Dr Elion a reçu son Doctorat en Médecine de l’Univ. Paris Descartes (1974) et son Doctorat de Sciences de l’Univ. Paris Diderot (1981). Il a été “Research Assistant” à la Mayo Graduate School of Medicine, Univ. of Minnesota, USA (1976-1977) et “Fogarty Visiting Scientist” aux National Institutes of Health, Bethesda, MD, USA (NIH-1985-1986).

Le Dr Elion est Professeur de Biochimie et Biologie Moléculaire à la Faculté de Médecine Paris Diderot (Univ. Sorbonne Paris Cité). En 1989, à l’ouverture de l’Hôpital Universitaire Robert Debré, il y a créé le Département de Génétique et en a été le directeur pendant 25 ans.

Le Pr Elion poursuit ses recherches à l’Unité 1134 de l’Inserm à Paris (Inst. National de la Transfusion Sanguine) et en Guadeloupe (Antilles Françaises). L’U 1134 est une des Unités constitutives du Laboratoire d’Excellence sur le Globule Rouge (GR-Ex). Les recherches du Pr Elion sont centrées sur la physiopathologie et les traitements innovants de la drépanocytose (sickle cell disease - SCD). Ses études ont identifié des marqueurs génétiques contribuant à la variabilité clinique de la maladie et démontré l’action de l’hydroxycarbamide (hydroxyurée) sur diverses cibles cellulaires (lignée érythroïde, cellules endothéliales, leucocytes) et sur l’expression de molécules impliquées dans l’adhérence cellulaire, le tonus vasculaire et l’inflammation.

Le Pr Elion a développé une collaboration active avec les pays en développement en Afrique, Inde et avec le Brésil (chaire franco-brésilienne à l’Université de São Paulo). Le Pr Elion a été membre et a présidé plusieurs Comités Scientifiques nationaux et internationaux dont celui du Global SCD Network. Il a organisé un grand nombre de Conférences nationales et internationales incluant la session scientifique de la Cérémonie Inaugurale de la 1ère Journée Mondiale de la Drépanocytose (19 Juin 2009) au Palais des Nations Unies à New York.

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Eliane Gluckman, MD

Hôpital Saint Louis, Université Paris-Diderot, European School of Haematology, Paris, France Eurocord-Monacord

Eliane Gluckman is former director of the Bone Marrow Transplant Unit, Hôpital Saint Louis, Professor at Hôpital Saint Louis, Université Paris-Diderot, President of the European School of Haematology, Founding member and former president of EBMT, Founder and Head of Eurocord-Monacord.

Recent Publications :

  1. Koenecke C, Heim D, van Biezen A, Heuser M, Aljurf M, Kyrcz-Krzemien S, Volin L, de Souza CA, Gedde-Dahl T, Sengeloev H, Schanz U, Komarnicki M, Arroyo CH, Tholouli E, Gluckman E, Esquirol A, Yakoub-Agha I, Gürman G, Olavarria E, Kröger N. Outcome of patients with chronic myeloid leukemia and a low-risk score : allogeneic hematopoietic stem cell transplantation in the era of targeted therapy. A report from the EBMT Chronic Malignancies Working Party.Bone Marrow Transplant. 2016 Apr 25.
  2. Rocha V, Ruggeri A, Spellman S, Wang T, Sobecks R, Locatelli F, Askar M, Michel G, Arcese W, Iori AP, Purtill D, Danby R, Sanz GF, Gluckman E, Eapen M. Killer cell immunoglobulin-like receptor ligand matching and outcomes after unrelated cord blood transplantation acute myeloid leukemia. Biol Blood Marrow Transplant. 2016 Apr 15.
  3. Ruggeri A, Paviglianiti A, Gluckman E, Rocha V. Impact of HLA in cord blood transplantation outcomes. HLA. 2016 Apr 6. doi: 10.1111/tan.12792
  4. Bernaudin F, Verlhac S, Arnaud C, Kamdem A, Hau I, Leveillé E, Vasile M, Kasbi F, Madhi F, Fourmaux C, Biscardi S, Gluckman E, Socié G, Dalle JH, Epaud R, Pondarré C. Long-term treatment follow-up of children with sickle cell disease monitored with abnormal transcranial Doppler velocities. Blood. 2016 Apr 7;127(14):1814-22.
  5. Guillaume N, Loiseau P, Gagne K, Moins-Teisserenc H, Cayuela JM, Henry G, Robin M, Peffault de Latour R, Gluckman E, Socié G, Retiere C, Dulphy N, Toubert A. Natural Killer cell licensing after double cord blood transplantation is driven by the self-HLA class I molecules from the dominant cord blood. Haematologica. 2016 Jan 27. pii: haematol.2015.138883.
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Heather Ann Hume, MD, FRCPC

University of Montreal, Montreal, Canada College of Health Sciences, Makerere University, Kampala, Uganda

Professor Hume holds an MD from Queen’s University and Certification in Pediatrics and Hematology from the Royal College of Physicians and Surgeons of Canada. She completed her fellowship in immunohematology at the Université de Pierre et Marie Curie and the Centre National de Transfusion Sanguine in Paris, France.

From 1985 to 2000 Pr. Hume was a full-time member of the Division of Hematology/Oncology in the Department of Pediatrics at Sainte-Justine Hospital, Montreal, a tertiary care pediatric/maternal hospital affiliated with the University of Montreal.

While at Sainte-Justine, she was the medical director of the hospital’s transfusion service and comprehensive care program for patients with hemoglobinopathies and thalassemia. She subsequently held the position of Executive Medical Director, Transfusion Medicine at Canadian Blood Services, the national blood supplier for Canada, outside Quebec.

Since 2010 she has returned to the Division of Hematology/Oncology in the Department of Pediatrics at Sainte-Justine Hospital, Montreal and divides her time between Montreal and Kampala, Uganda.

She currently holds the positions of Professor, Clinical Medicine, Department of Pediatrics, Faculty of Medicine, University of Montreal, Canada and Visiting Professor, Department of Paediatrics and Child Health, College of Health Sciences, Makerere University, Kampala, Uganda.

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Phillip Kasirye, MBchB, MMed

Mulago Hospital, Kampala, Uganda

Dr Phillip Kasirye, MBchB, MMed, and Global Health Leadership Fellow, is a Paediatrician at Uganda’s oldest and largest hospital in Uganda, Mulago National Referral and Teaching Hospital, where over 11000 patients are registered in care.

He holds a Masters of Medicine Degree of Makerere University since October 2006 and 16 years of clinical experience in rural and urban settings.

Dr Kasirye Joined Mulago Hospital in January 2012 and has headed the hospital’s sickle cell clinic since June 2013.

He has held many community educative sessions on sickle cell disease, training of health workers and participating in many research programs in Mulago hospital including the Hydroxyurea clinical trial – NOHARM among others.

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Robert Kitenge, MD

Centre de Formation et d’Appui Sanitaire « CEFA », Kinshasa, RDC

Né, à kinshasa 01/05/1984 en République démocratique du Congo. Nationalité : congolaise. Diplôme Médecine (2012), Diplôme universitaire de la drépanocytose(université des sciences techniques et des technologies de BAMAKO 2015).

Expériences professionnelles: Médecin coordinateur de projets dépuis 2012 au CEFA/MONKOLE où je m’occupe de la coordination des activités de terrain :

Sur le dépistage néonal néonatal de la drépanocytose dans le cadre programme d’amélioration de la prise en charge socio-sanitaire des drépanocytaires en Afrique Centrale et Madagascar ;

Du projet d’appui pluridimensionnel aux strucutures et instituts de santé en vue de dévolopper les capacités laborantines dans 4 provinces de la RDC.

Langues: français, swahili et le lingala.

Centre de Formation et d'appui Sanitaire «PETER».

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Charles Kiyaga, MSc, MPhil

Central Public Health Laboratories, Uganda Ministry of Health

Charles Kiyaga is a biomedical scientist who earned Bachelor’s Degree in Biomedical Laboratory Technology from Makerere University Kampala, and a Bachelor’s Degree in Health Systems Management from the University of Manchester UK. He also earned a Master’s Degree in Biomedical of Science and Management from Makerere University Kampala, Uganda, and a Master of Philosophy in Medical Science (MPhil) from the University of Cambridge UK. He also holds a Diploma in Health Management from Galilee International Management Institute, Israel.

He is the National Sickle Cell Program Coordinator at the Ministry of Health Uganda, and has been the Chairperson of the Organizing Committee of REDAC 2016.

Charles also holds a number of other portfolios at the Central Public Health Laboratories as the National EID Program Coordinator, the National Viral Load Coordinator and the National Sample Transport Coordinator, all of which were initiated by him.

Charles has worn several international awards for his outstanding performance.

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Caroline Le Van Kim, PhD

Université Paris Diderot, Sorbonne Paris-Cité, Paris, France

Research Unit Inserm/University Paris Diderot UMR_S 665 in the National Institute of Blood Transfusion (INTS).

Head of a Team « Normal and pathological red blood cell physiology ». 15 researchers and University researchers, 6 engineers, 8 post-docs and PhD. 104 peer-reviewed publications.

Chevalier de l’Ordre du Mérite.

Co-director of the French laboratory of excellence « GR-Ex » (30 teams).

Director of the doctoral school BioSorbonne Paris Cité Paris Descartes-Paris Diderot. PhD students: 600.

Advisor for the National Institute for Blood Transfusion.

Expert HCERES (High Council for the Evaluation of Research and High Education)

Significant Publications in the sickle cell disease field from 2010 :

Bartolucci P, Chaar V, Picot J, Bachir D, Habibi A, Fauroux C, Galacteros F, Colin Y, Le Van Kim C, and El Nemer W. Decreased sickle red blood cell adhesion to laminin by hydroxyurea is associated with inhibition of Lu/BCAM protein phosphorylation. Blood116: 2152-2159, 2010.

Chaar V, Picot J, Renaud O, Bartolucci P, Nzouakou R, Bachir D, Galacteros F, Colin Y, Le Van Kim C, and El Nemer
W. Aggregation of mononuclear and red blood cells through an {alpha}4{beta}1-Lu/basal cell adhesion molecule
interaction in sickle cell disease. Haematologica95: 1841-1848, 2010.

Chaar V1, Laurance S, Lapoumeroulie C, Cochet S, De Grandis M, Colin Y, Elion J, Le Van Kim C, El Nemer W. Hydroxycarbamide decreases sickle reticulocyte adhesion to resting endothelium by inhibiting endothelial Lu/BCAM through phosphodiesterase 4A activation. J Biol Chem. 2014 ;289(16):11512-21.


Sandor B, Marin M, Lapoumeroulie C, Rabaï M, Lefevre SD, Lemonne N, El Nemer W, Mozar A, Français O, Le Pioufle B, Connes P, . Effects of Poloxamer 188 on red blood cell membrane properties in sickle cell anaemia. Br J Haematol. 2016 173(1):145-9.

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Danielle Lena, PharmD

Université de Marseille
Interne des hôpitaux Assistance Publique de Marseille (APHM)
Marseille, France

  • Directeur du Laboratoire de l‘Institut de Pédiatrie, Faculté de Médecine de Marseille. 1980-1994
  • Membre du groupe d’expert OMS « European and Méditerranéan workking Group on Hemoglobinopathies disordeurs » 1986-2005.
  • Directeur du Laboratoire des hémoglobines du Centre d’Enseignement et de Recherche en Génétique Médicale
    (CERGM), Faculté de Médecine de Marseille 1994-2002.
  • Présidente de l’association Méditerranée-Hémoglobines (Med-Hem) , depuis 1998. Prévention des maladies
    génétiques à expression hématologiques : étude épidémiologique, clinique et biologique. Information des
    professionnels de santé, des familles et du public.
  • Conseiller scientifique de l’OILD : Organisation Internationale de Lutte cotre la drépanocytose, de 2000 à 2009.
    Principal objectif de l’OILD : faire connaître la Drépanocytose en sensibilisant les populations, les décideurs et le
    personnel soignant : au Bénin, au Togo, au Sénégal, au Congo et en Inde.
    2005, Etats Généraux de la drépanocytose à Brazzaville.
  • Membre de l’association Santé – Sud dont la devise est « Agir sans remplacer ». Participation depuis 2008 à des
    missions d’accompagnements pour l’élaboration de projets d’établissements et de projets associatifs selon
    un processus de concertation incluant les structures de santé, le corps soignant et les associations locales dans
    des pays africains : au Mali, Sénégal, Niger, Mauritanie et à Madagascar.
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Lucio Luzzatto, MD, PhD

Muhimbili University College of Health Sciences (MUHAS), Tanzania

RESEARCH STATEMENT: LUCIO LUZZATTO’S main goal in research and teaching has been the understanding of human disease at the molecular level; throughout his career he has always combined scientific work and clinical work. His research has concentrated on the genetic basis of blood disorders. Main contributions. (a) Molecular genetics, clinical aspects and populations genetics of glucose 6-phosphate dehydrogenase (G6PD); this was the first human enzyme of which molecular cloning was achieved with M G Persico in 1986. (b) Genetics of haemoglobinopathies and inherited susceptibility to malaria. Lucio Luzzatto’s group helped to elucidate since the nineteenseventies the mechanism whereby several genes expressed in red cells confer relative resistance against lethality of Plasmodium falciparum. In year 2000 Luzzatto collaborated with M Sadelain to obtain correction of thalassaemia by gene therapy in a pre-clinical mouse model. (c) Pathogenesis, molecular basis and clinical aspects of paroxysmal nocturnal hemoglobinuria (PNH). Lucio Luzzatto with his collaborators first provided evidence that this was a clonal disorder; subsequently his group identified the underlying biochemical abnormality, and with Bruno Rotoli and others provided the currently accepted model to explain the expansion of PNH clones. In 2006 Luzzatto was the senior author in a paper published in NEJM that led to the licensing of eculizumab, the first medicine approved specifically for PNH. Luzzatto has about 390 publications in learned journals, and several chapters in major textbooks. In 2006 he has published for Rizzoli an educational book for the public, Capire il Cancro (Understanding Cancer).

SUMMARY CV: LUCIO LUZZATTO was born in Genova, Italy, on September 28, 1936. Married to Paola Caboara Luzzatto, with two children, Stefano and Fatima. Qualified MD from the University of Genova Medical School in 1959. Trained in Haematology in Pavia, and at Columbia University in New York. Obtained Libera Docenza in Biochemistry in 1968. From 1964 to 1974 was Lecturer, then Professor of Haematology at the University of Ibadan, Ibadan, Nigeria. From 1974-1981 was Director of the International Institute of Genetics and Biophysics, CNR, Napoli, Italy. In 1981 Lucio Luzzatto succeded Sir John Dacie as Professor of Haematology and Director of the Haematology Department at the Royal Postgraduate Medical School, University of London, Hammersmith Hospital, where from 1987-1993 he was also Honorary Director of the MRC/LRF Leukaemia Unit; he obtained FRCPath in 1982 and FRCP in 1983. In 1994 Lucio Luzzatto became Professor and founding Chairman of the Department of Human Genetics at Memorial Sloan-Kettering Cancer Center, and Professor of Medicine and Human Genetics, Cornell University Medical College, New York, NY, USA. From 2000 to 2004 Lucio Luzzatto was Scientific Director of the National Institute for Cancer Research, Genova, Italy; and from 2005 to 2015 Scientific Director of the Istituto Toscano Tumori, Firenze, Italy. In 2002 he was also appointed to a personal Chair of Haematology. Currently he is Professor of Haematology at the Muhimbili University of Health and Allied Sciences, Dar-es-Salaam, Tanzania. He has obtained Medical Licences in Italy, Nigeria, UK, New York State, Tanzania. Luzzatto holds honorary degrees from the University of Urbino, Italy (1990), the University of Ibadan, Nigeria (1998), and the University of Patras, Greece (2006). He is honorary member of the American Society of Hematology, he has been Founding President of the Nigerian Society for Haematology, President of the Italian Association of Genetics, Chairman of the Ethics Committee of the American Society for Gene Therapy, member of EMBO since 1979, of HUGO since 1990, and member of the American Association of Physicians.

Lucio Luzzatto has obtained several awards, including the William Dameshek Medal (1975) the Pius XI Medal (1976), the Jose Carreras Medal (2002), the prizxe in Biology of the Accademia Nazionale dei Lincei (2015). In 2004 he was elected Foreign Member of the American Academy of Arts and Sciences..

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Patrick T. McGann, MD, MS

Division of Hematology, Cincinnati Children’s Hospital Medical Center Cincinnati, Ohio, USA

Patrick T. McGann, MD MS, is an Assistant Professor of Pediatrics in the Division of Hematology at Cincinnati Children’s Hospital.

Dr. McGann received his undergraduate degree at the College of the Holy Cross and his Medical Degree at Tufts University School of Medicine in Boston, Massachusetts. He completed his pediatric residency at Massachusetts General Hospital and his pediatric hematology/oncology fellowship at St. Jude Children’s Research Hospital and Baylor College of Medicine, where he also obtained a Master’s Degree in Clinical Investigation.

Dr. McGann was closely involved in the development of a pilot newborn screening program in Luanda, Angola, where he lived permanently for 1.5 years. His research focuses on improving the diagnosis and optimizing the care for children with sickle cell anemia, particularly in sub-Saharan Africa.

He is closely involved in the REACH trial in Africa as the Clinical Coordinator and through the Therapeutic Response Evaluation and Adherence Trial (TREAT), he is working to individualize hydroxyurea therapy using PKbased dosing.

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Mariane de Montalembert, MD, PhD

Necker Hospital, Paris; Reference Center for Hemoglobinopathies, and Labex GREx, Paris, France

Dr Mariane de Montalembert has been a paediatrician at the Necker-Enfants Malades Hospital in Paris, France since 1985. She received additional training in infectiology and transfusion medicine, and got a got a PhD in Ethics in 1994. She is Associate Professor of Paediatrics at the Paris Descartes University.

She has been responsible for the centre for haemoglobinopathies at the Necker-EnfantsMalades Hospital since 1994. Prof de Montalembert initiated the RoSFED, a regional healthcare network for sickle cell children in the Greater Paris Metropolitan Area (Région Ile-de-France) of which she is the director.

She has developed several lines of clinical research in paediatrics mostly on sickle cell disease and thalassaemia. She is responsible for the French register of sickle cell disease children treated with hydroxyurea.

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Deogratias Munube, MBCHB, MMED, PhD

Mulago Hospital/Makerere University College of Health Sciences Kampala, Uganda

Deogratias is a paediatrician and PhD fellow in the Department of Paediatrics and Child Health.

He has had 10 years experience in neonatal and child health (5 years up-country and 5 years in an urban setting). He works primarily on the Paediatric Haematology and Oncology Ward/Sickle Cell Clinic and Day Care Unit.

He is currently pursueing a PhD in Neurology with a focus on sickle cell anaemia and stroke. He is studying the risk factors for stroke in a Ugandan population of sickle cell children.

In addition, he is an ETAT+ trainer (Emergency Triage Assessment and Treatment in the first 24 hrs, and has participated in the introduction of ETAT+ in Uganda with the support of the Department of Paediatrics and Child Health, Makerere University / Ministry of Health, Uganda and in partnership with the Royal College of Paediatrics and Child Health, UK. He is a member of the National Task force for Sickle cell disease in Uganda and the Vice president of the Uganda Paediatric Association.

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Isaac Odame, MBChB

Division of Hematology/Oncology and the Centre for Global Child Health at the Hospital for Sick Children, Toronto, Canada

Dr. Odame is a Staff Physician in the Division of Hematology/Oncology and the Centre for Global Child Health at the Hospital for Sick Children, Toronto, Canada. He is Professor and Director of the combined Division of Adult and Pediatric Hematology in the Departments of Medicine and Pediatrics, Faculty of Medicine, University of Toronto. He holds the Alexandra Yeo Chair in Hematology in theUniversity of Toronto.

The focus of Odame’s academic work and clinical care are patients with sickle cell disease and thalassemias and other hematological disorders. Currently, Odame is the Director of the Global Sickle Cell Disease Network based at the Hospital for Sick Children, Centre for Global Child Health that is committed to building enduring collaborations between clinicians and scientists worldwide. Under his leadership sickle cell disease clinicians/scientists across Africa, Middle East, India, Europe, North and South America are working more collaboratively in research initiatives aimed at delivering interventions that are evidence-based, cost-effective and sustainable over the long-term, particularly in low-income countries with the highest disease burden.

Odame was previously Associate Professor at McMaster University where he was also the Director of the Residency Program in Pediatric Hematology/Oncology. He is a medical graduate of the University of Ghana and undertook his specialty training in pediatrics and hematology/hematopathology in the UK.

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Robert O. Opoka, MBChB, MMED, MPH, MHPE

Department of Paediatrics and Child Health, Mulago Hospital and Makerere University, Kampala, Uganda

Dr. Opoka is a Paediatrician/epidemiologist/Educationalist presently working as a Senior Lecturer at the College of Health Sciences Makerere University. He is the Head the emergency Paediatric Unit of Mulago hospital, which is the national referral hospital for Uganda. He also holds an appointment at the Division of Global Pediatrics, at the University of Minnesota as an Adjunct Assistant Professor. Over the last 15 years he has been involved in a number of severe malaria studies focusing mainly on the neuro-cognitive outcomes of severe malaria and interventions to address these outcomes. Over the last couple of years he has developed interest in hematological conditions affecting children. In this respect he is pursuing a PhD on the burden, management and outcomes of severe anemia in Ugandan Children. He is part of the team conducting the hydroxyurea trial in Mulago Hospital.

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Brigitte Ranque, MD, PhD

Service de Médecine interne, Hôpital Européen Georges Pompidou
Université Paris Descartes
Inserm UMR_S970
Paris, France

After her medical school and Internal Medicine internship in Paris, Brigitte Ranque spent 4 years in an Inserm laboratory directed by Laurent Abel and Jean Laurent Casanova (Human genetics of infectious diseases) as a Master then PhD student. She worked on the human genetic susceptibility to mycobacterial diseases (especially leprosy and tuberculosis), which gave her a good experience of statistics, translational research and genetic epidemiology in developing countries (Vietnam, west and central Africa). She defended her PhD in Genetic Epidemiology in 2007.

Since 2007, she works as a physician in the Internal Medicine unit of the Georges Pompidou European Hospital (HEGP), which is one of the sites of the national reference center for the sickle cell disease (SCD). After a 4 year fellowship, she was nominated as an Associated Professor at the Paris Descartes University medical school in 2011 than obtained a full Professor position in 2015.

In 2011, she joined Prof. Xavier Jouven’s team “Epidemiology of cardiovascular diseases” (Inserm UMR_S970) as a researcher. She has initiated with Prof Jouven the CADRE study in 2011, a large multinational epidemiological study of the micro- and macro-vascular complications of SCD in West and Central Africa. She has been coordinating the study since then. She also collaborates with researchers in the fields of red cell physiology and transfusion through the GrEx consortium and has initiated several translational studies on SCD.

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Marvin Reid, MD, PHD

Tropical Metabolism Research Unit, University of the West Indies, Kingston, Jamaica

Prof Marvin Reid is the director of the Tropical Metabolism Research Unit and Associate Lecturer in Department of Community Medicine and Psychiatry at the University of the West Indies, Mona (UWI). He was also the leader of the Sickle Cell Programme in Jamaica 2004-2013. His research interests spans the gamut of community medicine, clinical trials and human metabolism. Specifically as a metabolist and clinical nutritionist, Prof. Reid conducts research using non-radioactive molecules to investigate how the body responds to illness and infections especially when malnourished or have high demands such as sickle cell disease. He has co-authored over 120 peer-reviewed articles and has received the Mona Campus Principal’s and the UWI Vice Chancellor’s Award for Research Excellence as well as other international awards for research publications. Professor Reid is a member of the Family Medicine Specialty Board of UWI and Clinical Trial Oversight Committee of Faculty of Medical Sciences, as well as a member of the Research Advisory Committee of Caribbean Public Health Agency (CARPHA), American Physiological Society and Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia (CAREST).

Ut wisi enim

Léon Tshilolo, MD, PhD

Centre de Formation et d’Appui sanitaire (CEFA), Centre Hospitalier Monkole, Kinshasa, DRC

Léon Tshilolo was born in Lubumbashi, DRC.

He graduated in Medecine in 1980 from University of Padua in Italy , he has got the post graduate fellowship in Paediatrics in 1984 after a Pediatric Residency Training in the Pediatric Hematology Department (L . Zanesco) . He went to Belgium (Institut St Léopold, Antwerpen) where he perfomed a graduate in Human and Animal Mycology and in Tropical Medicine before his return to DRC in 1985.

From 1995 to 1997, he performed his skills by training in Hematology and Chemistry at Erasme Hospital, ULB in Brussels ( F. Vertongen), Hôpital Robert Debré in Paris (J Elion) and Hammersmith Hospital, London/UK (LLuzzatto), respectively.

He is a visiting professor at Campus Bio Medico di Roma, Italy. He is also temporary Consultant of WHO as expert in hemoglobinopathies.

Léon Tshilolo was the Medical Director of Centre Hospitalier Monkole (1998-2015) in Kinshasa where he implemented in 2009 the first systematic newborn screening of SCD.

He is presently Director of the Educational and Training Center “CEFA” (Centre de Formation et d’Appui sanitaire) in Kinshasa, and displayed regular Educational program dedicated to physicians and biologists.

Léon Tshilolo is a Co-founder and the president of the “REDAC”, a network of Sickle Cell Study in Central Africa, who develops multicentric studies on SCD in Central Africa. He is also the DRC leader Investigator of REACHRealizing Effectiveness Across Continents with Hydroxyurea.

He is a Member of the French National Academy of Medecine (Académie Nationale de Médecine de France).

Ut wisi enim

Russell E. Ware, MD, PhD

Division of Hematology, Cincinnati Children’s Hospital Medical Center Cincinnati, Ohio, USA

Dr. Russell Ware obtained his MD and PhD degrees at Duke University, completed his Pediatric Hematology/Oncology fellowship at Duke, and was Director of the Duke Pediatric Sickle Cell Program until 2004. He moved to St. Jude Children’s Research Hospital, serving as Chairman of Hematology before leaving to lead a sickle cell newborn screening program for the Republic of Angola.

In July 2013, Dr. Ware joined Cincinnati Children’s Hospital Medical Center in Cincinnati Ohio as Director of Hematology, where he is Professor of Pediatrics, holds the Marjory Johnson Chair of Translational Hematology Research, and is Associate Director of the Global Health Center.

Dr. Ware is an internationally recognized expert in the field of pediatric hematology with a special interest in sickle cell disease. He has had an NIH-funded laboratory since 1990, which has focused primarily on genetic modifiers of sickle cell disease and variable responses to hydroxyurea therapy.

He was Principal Investigator for numerous NIH-funded clinical trials using hydroxyurea for children with sickle cell anemia including BABYHUG, HUSTLE, SWiTCH, SCATE, and TWiTCH, and he leads efforts to introduce hydroxyurea treatment safely and effectively into the Caribbean through EXTEND and SACRED, and into sub-Saharan Africa through REACH and NOHARM.

Dr. Ware is a distinguished researcher and author of more than 300 peer-reviewed scientific papers and chapters. He has served on the Editorial Board of Blood and Journal of Pediatrics, and is currently Associate Editor for Pediatric Blood and Cancer. He was a member of the NIH-appointed Expert Panel that wrote the 2014 Evidence-Based Guidelines for Sickle Cell Disease.

Ut wisi enim

Tom Williams, MD, PhD

KEMRI Wellcome Trust Research Programme, Kilifi, Kenya Imperial College, London, United Kingdom

Tom Williams is a specialist pediatrician and clinical investigator with more than 25years of scientific experience.

Since 2000, he has worked full time at the KEMRI Wellcome Trust Research Programme in Kilifi, Kenya, a leading center for the conduct of epidemiological and clinical research, while holding a parallel appointment as Professor of Hemoglobinopathy Research at Imperial College, London.

The main focus of Tom’s research is on genetic conditions that affect red cell structure and function. His earlyfocus was on the epidemiology and biology of the malaria resistance phenotype that is associated with many of these conditions (including the thalassemias and the sickle cell trait), but with time he has also turned to the negative consequences of these conditions, with a particular focus on sickle cell disease (SCD).

Tom Williams is Head of the Department of Epidemiology and Demography in Kilifi and is responsible for the management and scientific oversight of the largest demographic surveillance system in Africa (280,000 under surveillance). In addition, he runs a program of research on the epidemiology and basic science of hemoglobin disorders in Kenya, and a specialist research clinic serving >700 children with SCD.

He has published extensively on the burden and natural history of SCD on local and global scales, and is active in the national dialogue for the development of treatment guidelines within Kenya. He has collaborated successfully in a range of previous network studies, most recently with the REACH multicenter trial of hydroxyurea in the management of children with SCD which is currently being conducted in 4 sites in Africa.


  • What’s new in the Management of Cerebral Vasculopathy in Sickle Cell Anemia?
  • The Sick(led) Spleen
  • Gene Therapy for Sickle Cell Disease
  • Prevalence and risk factors of chronic kidney disease in steady state sickle cell anaemia patients aged 5-16 years seen at the university teaching hospital, Lusaka - Zambia.
  • « Fy-nul (Fya-b-), le phénotype de groupe sanguin Duffy le plus fréquent chez les patients drépanocytaires et dans la population générale africaine : un avantage sélectif de protection contre Staphylococcus aureus par privation de fer? »
Dual use of MALDI-TOF Mass spectrometry for clinical microbiology and newborn screening of SCD
  • "Avancées physiopathologiques et développement de nouvelles drogues dans la drépanocytose"
  • Hematopoietic Stem Cell Transplantation from HLA Identical Sibling For sickle Cell Disease an International Survey on Behalf of Eurocord-Monacord, EBMT Paediatric Disease Working Party and CIBMTR
  • Transfusion Support and Safety in Sickle Cell Disease in Africa
  • Applying the National Heart Lung and Blood Institute (NHLBI) Transfusion Guidelines to Uganda
  • Expérience de la Plate Forme de Veille , Suivi et Prise en Charge de la drépanocytose en RDC
  • Newborn Screening in Uganda
  • New tools for investigating blood cell properties in sickle cell disease: application for drug efficiency
  • Dépistage et prise en charge des enfants atteints de Syndrome Drépanocytaire Majeur dans les pays en développement
  • Intravascular hemolysis, G6PD deficiency and sickle cell anaemia in malaria-endemic regions
  • Sickle cell anaemia: science, ethics, public health
  • Expérience des traitements transfusionnels par Érythraphérèse au CRD1 Adultes de Martinique, bientôt 4 années
  • The TREAT Clinical Trial
  • Point-of-Care devices for the rapid diagnosis of sickle cell disease
  • Iron pathways in sickle cell disease
  • Stroke prevalence in Children with Sickle Cell Anaemia in Mulago Hospital
  • Break the Silence: Community Education and Outreach
REDAC – sickle cell disease