Dr. Julie Makani is an Associate Professor in the Department of Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences in Tanzania. She completed her undergraduate/postgraduate training at the University of Dar es Salaam, then she continued her training in the UK, receiving the FRCP from the Royal College of Physicians and the PhD from the Open University. Dr. Julie's clinical area of interest is haematology, with a focus on sickle cell disease. She has published extensively in this area and established/been a member of a number of networks and projects at national, regional and global level. One of her projects is the H3ABioNet Genomic Research Network, in which Nicola Mulder, an AIMS South Africa Executive Team Member from UCT, plays a leading role. She has been awarded several honors including the Archbishop Desmond Tutu Leadership Fellowship at the African Leadership Institute.     Representative Publications: Sickle cell disease: new opportunities and challenges in Africa Sickle cell disease in Africa: an overview of the integrated approach to health, research, education and advocacy in Tanzania, 2004-2016 Rates and risk factors of hypertension in adolescents and adults with sickle cell anaemia in Tanzania: 10 years’ experience Decreased Hepcidin Levels Are Associated with Low Steady-state Hemoglobin in Children With Sickle Cell Disease in Tanzania A pilot study of a non-invasive oral nitrate stable isotopic method suggests that arginine and citrulline supplementation increases whole-body NO production in Tanzanian children with sickle cell disease   Online profile

Ms. Paulette E. Forbes serves as an inpatient advanced practitioner nurse in pediatric hematology/oncology Department at Rutgers Cancer Institute of New Jersey and Bristol-Myers Squibb Children's Hospital at Rutgers, The State University of New Jersey. She works with children living with sickle cell disease. Ms. Forbes dissertation work focuses on the process of moving children with sickle cell from the pediatric to the adult health care system. Through her dissertation project, she aspires to contribute in building comprehensive, multidisciplinary transitional care models that promote seamless and effective transfer of medical care from the pediatric to adult healthcare system. Online profile

Dr. Isaac Odame is a staff physician and Medical Director of the Global Sickle Cell Disease Network at the Centre for Global Child Health at The Hospital for Sick Children, Toronto. He is also one of the founders of the Global Sickle Cell Disease Network based at The Hospital for Sick Children (SickKids) in Toronto. Dr. Odame played a leading role in the implementation of a newborn screening program for early detection and treatment of sickle cell disease in new born babies. Dr. Isaac is also a Professor of Hematology/Oncology at the Department of Paediatrics, University of Toronto and the Hematology Division Director in the Department of Medicine. His academic work and clinical care focuses on patients with sickle cell disease, and thalassemias and other hematological disorders.   Representative Publications: Hydroxycarbamide versus chronic transfusion for maintenance of transcranial doppler flow velocities in children with sickle cell anaemia-TCD With Transfusions Changing to Hydroxyurea (TWiTCH): a multicentre, open-label, phase 3, non-inferiority trial The severity of anaemia depletes cerebrovascular dilatory reserve in children with sickle cell disease: a quantitative magnetic resonance imaging study Effectiveness of preoperative screening for sickle cell disease in a population with a newborn screening program: a cohort study Assessment of cerebral blood flow with magnetic resonance imaging in children with sickle cell disease: A quantitative comparison with transcranial Doppler ultrasonography Association of wheeze with lung function decline in children with sickle cell disease Online profile

Ashley Singleton is a Program and Research Manager at the Emory University. Her areas of expertise include adolescent sexual and reproductive health, strategic planning, and program evaluation. Singleton’s current projects include work with the Center of Excellence for Children’s Behavioral Health to provide fidelity monitoring and workforce development for High Fidelity Wraparound initiatives in the state. She also assists with coordinating a program, funded by the Centers for Disease Control and Prevention, that focuses on characterizing the complications associated with therapeutic blood transfusions for hemoglobinopathies. Ashley Singleton completed her master’s in Public Health from the University of South Florida. She has received her B.S from University of South Carolina. Online profile

John James is the chief executive of the UK Sickle Cell Society. He helps to raise awareness about SCD. John has also worked for National Health Service (NHS) for a very long duration before working at the UK Sickle Cell Society and he received a national NHS Leadership award too. He is very dedicated in personal development with the Sickle Cell Society’s accreditation against the Investors in People Standard. Under John’s leadership, the Sickle Cell Society has also worked in collaboration with patients and healthcare professionals to publish the 2nd edition of a national set of standards of care for adults living with sickle cell disorder. He has also held senior management and board level (trustee) posts at national charities such as at Primary Care Trusts, London Teaching Hospitals, and Mental Health Trusts. He also served as a senior civil servant for the Department of Health under Professor Sir Bruce Keogh. John James was awarded an OBE (Officer of the Most Excellent Order of the British Empire) for his service to sickle cell and health as part of the Queen’s Birthday Honours.   Representative Publications: How many people have sickle cell disease in the UK?   Online profile

Dr. Hulbert is the Director of the Sickle Cell Disease Program at St. Louis Children's Hospital. Her aim is to ensure that children with sickle cell disease (SCD) receive optimal medical care that comprises of management of symptoms of SCD and improved treatments that reduce the severity of the disease.  She also works as an Assistant Professor of Pediatrics, Hematology and Oncology at the Department of Pediatrics, Washington University School of Medicine. Dr. Monica Hulbert completed her M.D. followed by residency and fellowship from Washington University School of Medicine in St. Louis. She was also honored as “Best Doctors” in St. Louis, 2015.   Representative Publications: Red blood cell transfusions during sickle cell anemia vaso-occlusive crises: a report from the magnesium in crisis (MAGiC) study A multicenter randomized controlled trial of intravenous magnesium for sickle cell pain crisis in children Hematopoietic stem cell transplantation for sickle cell disease: Progress and challenges Regional oxygen extraction predicts border zone vulnerability to stroke in sickle cell disease Determining the longitudinal validity and meaningful differences in HRQL of the PedsQL™ Sickle Cell Disease Module   Online profile

Eileen Hansbury is a Physician Assistant at Boston Children's Hospital. She helps in management and treatment of blood diseases including sickle cell and thalassemia. Eileen Hansbury combines a strong background in qualitative and quantitative research with hands-on success as a physician assistant to strike an effective balance between patient care and scientific advances. She is a multi-disciplinary collaborator and is experienced with prospective and retrospective analysis in private, nonprofit, and government-funded initiatives. Eileen Hansbury has earlier worked in Texas Children’s Hospital at the Haemotology Center with a primary responsibility to manage and treat sickle cell disease and the associated multi-system complications including vaso-occlusive pain, cranial vasculopathy, retinal disease, obstructive sleep apnea, asplenia, hemosiderosis, cardiac, pulmonary, hepatic and renal disease. Ms. Hansbury has also worked in the pediatric hematology department at St. Jude Children's Research Hospital as a clinical care provider. She assisted in the diagnostic and therapeutic management of endocrinopathies in children with catastropic diseases including brain or other solid tumors, leukemia, aplastic anemia, osteogenesis imperfecta and other rare genetic diseases.   Representative Publications: Transcranial Doppler velocity and brain MRI/MRA changes in children with sickle cell anemia on chronic transfusions to prevent primary stroke The impact of preparation and support procedures for children with sickle cell disease undergoing MRI Bone marrow transplant options and preferences in a sickle cell anemia cohort on chronic transfusions Online profile

David Archer is a pediatric hematologis/oncologist at Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta. He is also engaged with Emory University School of medicine as associate professor (Hematology/Oncology/BMT – Sickle cell) in department of pediatrics. His research interests are focused on the pathogenesis of sickle cell disease in respect to the generation, prevention and treatment of organ dysfunction. His recent studies on the pathogenesis of sickle cell nephropathy are likely to examine the role of endothelial cells in the generation of both the proteinuria and the concentrating defects associated with renal dysfunction. In particular his lab employs hematopoietic stem cell transplantation to correct the hematological defect in murine models of sickle cell disease. Dr. Archer and his lab have considerable experience in the maintenance of sickle mouse colonies, transplantation, hematological and functional analysis of the outcomes. He has many published research articles to his credit by working on animal models of sickle cell disease and its complications.   Representative Publications: Sickle Mice Are Sensitive to Hypoxia/Ischemia-Induced Stroke but Respond to Tissue-Type Plasminogen Activator Treatment Nonhematopoietic Nrf2 dominantly impedes adult progression of sickle cell anemia in mice Body composition and grip strength are improved in transgenic sickle mice fed a high-protein diet C-reactive protein and interleukin-6 are decreased in transgenic sickle cell mice fed a high protein diet Chimerism and cure: hematologic and pathologic correction of murine sickle cell disease The glomerulopathy of sickle cell disease Estimation of glomerular filtration rate using serum cystatin C and creatinine in adults with sickle cell anemia Online profile

Dr. James is an OB-GYN consultant and a specialist in maternal-fetal medicine and high-risk obstetrics. Her special interest is the care of women with medical conditions during pregnancy. Although her research and publications pertain to the care of women with blood disorders (thrombosis and thrombophilia), bleeding disorders (including von Willebrand disease), platelet disorders (including ITP), and sickle cell disease, she also see women with lupus, heart disease, diabetes, and other medical conditions as well. She is also available to meet with women and their partners prior to pregnancy for preconception consultation.Dr. Andra H. James studies the impact of blood disorders on reproduction with the ultimate goal of improving pregnancy and other health outcomes for affected women. She has directed or collaborated on projects ranging from basic science to epidemiological investigations. Representative Publications:Fertility challenges for women with sickle cell diseaseMorbidity associated with sickle cell disease in pregnancyEvidence gaps in the management of sickle cell disease: A summary of needed researchNational Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell diseaseNIH consensus development statement on hydroxyurea treatment for sickle cell disease Online profile

Dr. Hagar is the Director of Adult Sickle Cell Program at the Comprehensive Center for Sickle Cell Disease. He provides adult hematology services for thalassemia center. His clinical specialties include sickle cell disease, thalassemia, apheresis, gene therapy, hemoglobinopathies, iron metabolism, statistics and pain management. Dr. Ward manages hundreds of sickle cell patients both in the clinic, hospital transfusion unit, and in local hospitals, serving as the sickle cell consultant and resource for emergency departments and hospitalist groups at the UCSF Benioff Children’s Hospital, Oakland. After completing both his Advanced Training in Clinic Research at UCSF and an NIH T32 clinical training program focusing on transfusional iron, he has been an investigator on numerous clinical trials involving sickle cell and thalassemia and their complications. He is actively involved in National Sickle Cell Policy. Dr. Ward Hagar is a co-author of the Social Security Administration’s revision of disability criteria for sickle cell and other anemias and serves on protocol design committees for multicenter studies. He continues to work on aspects of adults with sickle cell disease, serving on the protocol design committee for multicenter studies for both pharmaceutical studies and NIH- funded trials.   Representative Publications: Nitric oxide for inhalation in the acute treatment of sickle cell pain crisis: a randomized controlled trial Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008 Teasing Apart Pain in Sickle Cell Disease Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management A pilot study of the short-term use of simvastatin in sickle cell disease: effects on markers of vascular dysfunction   Online profile