Michele Lloyd-Puryear, MD, PhD,
Michele Lloyd-Puryear is a pediatrician and geneticist. Currently, she works as a Consultant to the American College of Medical Genetics and Genomics. She has held academic appointments and has worked in pediatric clinics at the local and international levels. Previously, Dr. Puryear served as Special Advisor at the Office of the Director and Senior Medical and Science Advisor at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH. Dr. Puryear has served in an oversight and advisory capacity about genetics and newborn screening for the Maternal and Child Health Bureau, Health Resources and Services Administration, other Health and Human Services Agencies, the Department of HHS and to nongovernmental organizations. She is a Fellow of the American Academy of Pediatrics and an Emeritus Member of the American College of Medical Genetics and Genomics. Over her 25 year commitment to infants, children and mothers, she has made numerous contributions nationwide that have improved and expanded the quality, services and scope of the Newborn Screening System and Medical Homes for children identified through newborn screening. Awards and honors for her work in maternal and child health and genetics and newborn screening include many awards from HHS, the Presidential  and the George Cunningham Visionary Awards  from the Association of Public Health Laboratories; the Guthrie Award from the March of Dimes , and awards [2005 and 2011] from the Sickle Cell Disease Association of America and the Genetic Alliance.
Rodney Howell, M. D., Professor and Chairman Emeritus of Pediatrics,
Miller School of Medicine of the University of Miami
Rodney Howell, M. D. is Professor and Chairman Emeritus of Pediatrics at The Miller School of Medicine of the University of Miami. He is certified by the American Board of Pediatrics and the American Board of Medical Genetics and Genomics in Clinical Biochemical Genetics.
Following four years at the National Institutes of Health, he was named the Joseph P. Kennedy Jr. Scholar in Mental Retardation and Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine. Dr. Howell was the then David R. Park Professor and Founding Chairman of Pediatrics at the University of Texas Medical School at Houston, and later Chair of Pediatrics at the University of Miami. He is an elected Fellow of the American Association for the Advancement of Science.
He is the author of over 175 original articles, numerous abstracts and other material dealing with serious genetic diseases in childhood. Recent work has focused on newborn screening. He has received the William G. Anlyan Lifetime Achievement Award from the Duke University Medical Alumni Association, the Lifetime Achievement Award of the American College of Medical Genetics Foundation in 2012, the Lifetime Achievement Award in Genetics from the March of Dimes. In 2015, he was the first recipient of the Advocacy Award from the American Society of Human Genetics for his excellence and achievement in applications of human genetics for the common good
In 2013, to commemorate the 30th anniversary of the Federal Rare Disease Act, the United States FDA named him one of the 30 Rare Disease Heroes.
While Founding Chair of the U.S. Congressionally-mandated Secretary’s Advisory Committee of Heritable Disorders in Newborns and Children (2004-2011), his committee advised the Secretary of HHS on issues concerning genetic testing in children which oversaw development of the Recommended Uniform Screening NBS Panel in the United States.
Dr. Howell is the current elected President of the International Society of Neonatal Screening, based in the Netherlands.
Dr. Howell has served the Muscular Dystrophy Association (MDA) for more than 30 years. He was first a member of the Medical Advisory Committee, then the Chairman of the Scientific Advisory Committee and later a member of the MDA Board. Dr. Howell has been Chairman of the MDA Board of Directors since 2007.
Prof. Amina BARKAT , MD, PhD in Nutrition
Phone : 00212 661385108
Pediatrician – Neonatologist – Nutritionist
Coordinator of the Commission for Continuing Medical Education at the Faculty of Medicine and Pharmacy of Rabat, University Mohammed V
Amina BARKAT is currently “Head of Department of Medicine and Neonatal Resuscitation, National Reference Center for Neonatology and Nutrition, Rabat Children’s Hospital”. She is a laureate of Mohammed V University of Rabat. She is a pediatrician, specialist in neonatology, neonatal resuscitation, at the Mediterranean faculty of Marseille. She is a Professor at the Faculty of Medicine and Pharmacy of Rabat. She was the major of her promotion during all medical studies and during her teacher training. She is a doctor in Nutrition. She has held various teaching and research responsibilities at Soussi University at the Faculty of Medicine and Pharmacy in Rabat and at Rabat Children’s Hospital, at the Ibn Sina Hospital Center. She is a member of the Mixed Research Unit in Nutrition and Food (URAC 39). She is an active member of the Ministry of Health and has participated in the development of multiple national programs in favor of the mother-child couple generally and the profile of the newborn particularly. She is a member of the National Audit Committee on Neonatal Death. She is also an active member of the national committee responsible for the fortification program. She has been invited to lead roundtables in multiple forums and congresses on education and research in nutrition, nutrition and health organized by national and international organizations (WFP, USAID, WHO, UNICEF, FAO, Micronutrients Forum, GAIN, IUNS, FANUS ..). In 2008 and 2013, she won the Maghreb Prize for Pediatrics. She has organized a large number of workshops and symposiums related to women’s and children’s health. Due to her training in research methodology and pedagogy (Diploma in Medical Methodology and Diploma in Pedagogy), she prepared a number of research project proposals for UPR for funding. She evaluated the research projects and prepared the evaluation reports. She is a member of the Research Center for Clinical Studies and Therapeutic Trials at the Faculty of Medicine and Pharmacy of Rabat and coordinator of the Commission for Continuing Medical Education. In this sense, it organizes annually a series of training for all categories of the profession. She has more than 100 indexed publications and more than 300 conferences in national and international events. Prof. BARKAT is president of the Moroccan Neonatology Society, as well as the Moroccan Neonatal Screening and Disability Prevention Society. These two companies work in harmony with Ministry of Health programs to reduce neonatal morbidity.
Careema Yusuf, MPH
Association of Public Health Laboratories
Careema Yusuf is a Manager for the Newborn Screening, Technical assistance and Evaluation Program (NewSTEPs) at the Association of Public Health Laboratories (APHL) where she manages the overall activities related to the website and data repository system for NewSTEPs. Careema provides technical assistance and support related to quality practices, data analysis and reporting. She has worked in a variety of public health settings that have included training in outbreak investigation policies and procedures to health personnel in Ghana, working at the State of Maryland on HIV/AIDS prevention program performance measures and with Johnson, Bassin & Shaw International working on quality improvement activities within substance use treatment programs in the US. Ms. Yusuf holds a Master of Public Health from the George Washington University in Washington, DC.
Guisou Zarbalian, MS, MPH
Manager, Newborn Screening and Genetics
Association of Public Health Laboratories
Guisou Zarbalian is a Newborn Screening and Genetics Manager at the Association of Public Health Laboratories (APHL) where she works closely with state public health laboratories and federal, local, and private partners to improve resources for newborn screening programs. Ms. Zarbalian earned a Master of Science in Pharmacology from Georgetown University and a Master of Public Health in Maternal and Child Health from the George Washington University. She has extensive experience in laboratory science, health communications, and research methodology.
Michael S. Watson, MS, PhD, FACMG
Michael S. Watson received his MS in Medical Genetics and his PhD in Physiology & Biophysics from the university of Alabama at Birmingham while focusing on human medical genetics; his postdoctoral training was in the Medical Genetics Training Program at Yale University School of Medicine where he was the Associate Director of Clinical Cytogenetics. He was
director of Clinical and Molecular Cytogenetics at Washington University School of Medicine in St. Louis, Professor of Pediatrics and Genetics from 1986–2001, Director of the Medical Genetics Training Program (1996-1999) and is certified by the American Board of Medical Genetics (ABMG) in Clinical Cytogenetics and as a PhD Medical Geneticist. He served on the Board of Directors of the American College of Medical Genetics (1992-1998) and was Vice President for Laboratory Affairs, and chaired numerous ACMG Committees. He was co-chair of the NIH/DOE Task Force on Genetic Testing from 1995 through 1997. He directed the HRSA funded project “Newborn Screening: Toward a Uniform Screening Panel and System”. He is project director of HRSA’s National Coordinating Center for Regional Genetics and Newborn Screening Collaboratives and for NIH/NICHD’s Newborn Screening Translational Research Network (NBSTRN) Coordinating Center. He is also a co-P.I. for the ClinGen Resource Project, an NIH/NHGRI funded project to clinically annotate genome variation. As of 2001, he became an Adjunct Professor of Pediatrics at Washington University School of Medicine and Executive Director of the American College of Medical Genetics and Genomics and the ACMG Foundation for Genetic and Genomic Medicine.
Dr Charles Kiyaga, MSc, MPhil, DSc. (Hon)
Central Public Health Laboratories, Ministry of Health Uganda
Charles Kiyaga is a Biomedical Scientist who earned a Master of Science in Biomedical Sciences from Makerere University Kampala, and a Master of Philosophy in Medical Science (MPhil) from the University of Cambridge UK. Charles also holds an Honorary Doctorate in Laboratory Science, from London Graduate School and Common Wealth University.
Charles initiated and runs the national sickle cell program in Uganda, after coordinating the successful Uganda Sickle Cell Surveillance Study (US3). He has held a number of portfolios at the Central Public Health Laboratories in Uganda as; the National HIV Early Infant Diagnosis (EID) Program, Viral Load program and the National Sample Transport Coordinator. He initiated all these programs which have worn several international awards, including the ASLM Best Practice Awards of 2012, 2014, and 2016.
Charles partly works at the African Society for Laboratory Medicine (ASLM) as the Program Manager of the Laboratory System Strengthening Community of Practice (LabCoP) project, in which he supports several African countries to build resilient laboratory systems.
Pr Mohamed Cherif Rahimy
Dr. Rahimy graduated from Health Sciences Faculty, Cotonou, Benin in 1982, following which he went to Paris, for extensive postgraduate training in Pediatrics, where he was conferred Pediatrician in 1987.
He then, practiced and furthered training in Pediatrics Immunology and Hematology, under the late Professor Etienne Vilmer at Hôpital Robert Debre. He gained experiences in several aspects of hematology and immunology, genetics, bone marrow transplantation, pediatrics HIV infection and malaria infection.
He actively participated in many innovative treatment projects including the use of Human Cord Blood as source of Stem Cells for Bone Marrow Transplantation and the Concept of “PCR Conversion” which lead to the strategy of Mother-to-Child HIV transmission prevention.
In January 1993, after such a sophisticated training and despite several solicitations to pursue his career in France, he decided to return back to Benin, where he was perfectly aware that the conducive environment and research facilities he was used to, do not exist.
Upon return, in addition to teaching Pediatrics he set up the first Neonatal Screening Program for Sickle Cell Disease (SCD) as well as a Comprehensive Clinical Care Program in Sub-Saharan Africa.
The specifically tailored strategy he implemented has been deemed relevant to the unique
conditions of African countries with outstanding scientific papers published in top-ranking
His determination and advocacy skill convinced National Authorities to institutionalize a National Program and to come forward to finance a separate building construction entirely devoted to Children with SCD care and research.
His actions were also instrumental to SCD recognition as a public health problem by International bodies.
Finally, he headed of the Writing Committee of “Sickle cell disease prevention and control: A Strategy for the WHO African Region” (Resolution AFRO/RC60/8, August 30, 2010).
Graduated in medicine from Agostinho Neto University, Luanda-Angola.
Specialist in Pediatrics at the Dona Estefânia Hospital, University of Nova de Lisboa, Portugal
Post-graduated in Hematology / Inumo-Hematology by the Escola Superior de Tecnologia de Saúde of Lisbon-Portugal
Special studies in Haematology at the Hemoglobinopathies Laboratory of the National Instututo Dr. Ricardo Jorge and at Fernando Fonseca Hospital, Lisbon-Portugal.
Since 2006, has been working at the David Bernardino Pediatric Hospital, as head of the Center of Support to the Anemic Patient. Provides a healthcare to patients with sickle cell disease and with haemophilia, conductes bone and medullary biopsy, provides healthcare of all patients admitted to the hospital, with haematological diseases.
Technical visit to a Haematological Center (HemoRio), providing follow-up of the neonatal screening process and follow-up of patients with sickle cell anemia.
Member of the team that initiated the neonatal screening for sickle cell anemia in Angola and has collaborated in the implementation of new sites for the screening and follow-up of children with sickle cell anemia
Trainer for health professionals courses, in Luanda and other provinces of Angola, to approach the patient with sickle cell disease (follow-up, approach in the emergency department and creation of dedicated consultation).
Trainer for Pediatrics specialists at the David Bernardino Pediatric Hospital.
Speaker for several events to angolan population providing information and clarification about sickle cell disease.
Principal investigator in Angola in multicentric study: Realizing effectiveness across continents with hydroxyurea (REACH).
Prof. LÉON TSHILOLO (MD, PhD)
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).
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 (L Luzzatto), respectively.
He is Professor of Pediatrics and hematology at the Ufficial University of Mbujimayi
(UOM) in DRC. He is a visiting professor at Campus Bio Medico di Roma, Italy and at
Université de Kinshasa (UNIKIN). Expert of ITHANET-HVP Global Globin Panel, he
is also temporary Consultant of WHO as expert in hemoglobinopathies. His research
interests are focused on SCD, HIV infection and malaria in children living in Africa.
Léon Tshilolo was the Medical Director of Centre Hospitalier Monkole (1998-2015) in
Kinshasa where he implemented in 2006 the first systematic newborn screening of
Léon Tshilolo is a Co-founder and the president of the “REDAC”, a network of Sickle
Cell Study in Central Africa; he is also the DRC leader Investigator of REACH-
Realizing Effectiveness Across Continents with Hydroxyurea.
He is a Member of the French National Academy of Medecine (Académie Nationale
de Médecine de France) and member of the Congolese Academy.
PROF DR ZILFALIL BIN ALWI
Professor Dr Zilfalil Bin Alwi is a senior consultant Pediatrician & clinical Geneticist at Hospital Universiti Sains Malaysia (USM), Kota Bharu, Kelantan. He received his specialist training in Pediatrics from the same university and later went to study at University of Aston, United Kingdom where he obtained a PhD in Pharmacogenetics. His research interest includes population genomics (genetic diversity of the Malay ethnic group) and genome wide studies on diseases common to the local population. Prof Zilfalil is the founder and head of the Malaysian Node of the Human Variome Project (MyHVP). He is a member of the Board of Directors of Human Variome Project (HVP) International and is the joint chairman for Global Globin 2020 Challenge (GG2020) — a global project by HVP which involve the systematic collection and sharing of variation data to fight haemoglobinopathies (Thalassemia and Sickle Cell Disease). He has also served as the Director of USM Human Genome Center from 2005 to 2009. Prof Zilfalil is the Chief Editor of several journals including the Malaysian Journal of Pediatrics and Child Health and GENETIK, which is the official bulletin of the Genetics Society of Malaysia. He is a
council member of the College of Pediatrics, Academy of Medicine of Malaysia and fellow of this Academy. He is also the founding president of the Malaysian Society of Human Genetics.
Augustine Kwabena Asubonteng, B.A (Hon)
Research Officer, Information Technology,
Sickle Cell Foundation of Ghana.
Augustine Kwabena Asubonteng graduated from the University of Ghana with B.A Sociology and Linguistics in the year 2014. He has also undertaken courses like; CommCare Application Building for Public Health Students 2019, CommCare Fundamentals and Application Building 2017 etc. at the Dimagi Academy.
And did his mandatory National Service at the Sickle Cell Foundation of Ghana (SCFG) and an additional voluntary work at the foundation in the period of 2014 to 2016.
He is currently the Research Officer IT at the Foundation under the National Newborn Screening Program for Sickle Cell Disease (NNbSP). He assisted in the recently published article “Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana” in the Journal of Genetic Counselling.
Professor Obiageli E. Nnodu
Obiageli E. Nnodu is Professor of Haematology and Blood Transfusion, Director, Centre of Excellence for Sickle Cell Disease Research and Training University of Abuja (CESRTA), Honorary Consultant Haematologist, University of Abuja Teaching Hospital Gwagwalada, Abuja, Nigeria. She a founding member of Sickle CHARTA and Vice Chair of the Nigerian Sickle Cell Support Society (SCSSN) which works with the government and professional groups for the control of SCD in Nigeria. In that capacity, she is responsible for most of the in-country activities of the Network. She serves on technical committees of the government on non-communicable diseases and has completed several national assignments related to SCD.
Professor Nnodu has NIH-funded clinical trial trainings and has participated in various clinical trials in haematology as Co- investigator, Principal Investigator and National –PI. She is a member of the African Consortium for Cancer Clinical Trials (AC3T) Steering Committee.
She is Nigeria PI for the Sickle Pan African Research Consortium (SPARCO), a Site Coordinator for the H3Africa SickleGenAfrica Consortium and the national coordinator of the American Society of Hematology African New-born Screening and Early Intervention Consortium. Professor Nnodu, a Chevening Scholar and alumnus of Imperial College London is Chair Advocacy, Sickle Pan African Network (SPAN).
Kwaku Ohene-Frempong, M.D.
Kwaku Ohene-Frempong left Ghana in 1966 for the United States to attend Yale University. He received his Bachelor of Science in Biology in 1970 and was awarded the William Mallory Award for the Best Student Athlete at Yale. He attended Yale School of Medicine, graduating in 1975; trained in Pediatrics at New York Hospital – Weill-Cornell Medical Center, and at Children’s Hospital of Philadelphia (CHOP) in Pediatric Hematology-Oncology (1977-80). Following a 6-year service at Tulane University Medical Center, where he established the Southern Louisiana Sickle Cell Center, he returned to CHOP in 1986.
At CHOP, he led the Comprehensive Sickle Cell Center from 1990 to 2010. From 1993 to 2008, with US National Institutes of Health grant, he and collaborators in Ghana developed the first public health programme for screening newborns for sickle cell disease in Africa. He and others in Ghana established the Sickle Cell Foundation of Ghana in 2004. Ghana launched its National Newborn Screening Programme for Sickle Cell Disease (NNSP-SCD) in November 2010.
Prof. Ohene-Frempong is currently Emeritus Professor of Pediatrics at the University of Pennsylvania, and Director Emeritus, Comprehensive Sickle Cell Center, CHOP. He is President, Sickle Cell Foundation of Ghana and Programme Coordinator, NNSP-SCD.
Carmencita David Padilla MD, MAHPS
Dr. Padilla is Academician of the National Academy of Science and Technology, Professor of Pediatrics and currently Chancellor of the University of the Philippines Manila. Dr. Padilla is a pioneer in genetics in the Philippines and the Asia Pacific region. She is responsible for setting up the clinical genetic services and the various genetic laboratories now housed at the National Institutes of Health (NIH) Philippines. She organized the national newborn screening services in the Philippines, currently available in 7000+ health facilities in the country. Dr. Padilla was founding director of the Institute of Human Genetics and the Newborn Screening Reference Center at NIH Philippines. In the Asia Pacific region, she is part of the pioneering group that established the Asia Pacific Society for Human Genetics and served as president in 2008-2010. Dr. Padilla is Council member of the Human Genome Organization, an international organization of scientists from 69 countries. She is past Vice President and Treasurer of the International Society for Neonatal Screening. Dr Padilla has more than 120 publications. In the area of policy making, she is responsible for the Newborn Screening Act of 2004 and the Rare Disease Act of 2016.
Peter J. Tonellato
Peter J. Tonellato, PhD is Founding Director, Center for Biomedical and Informatics Research, and Professor of Bioinformatics, School of Medicine, University of Missouri. He seeks to apply mathematic, statistic and bioinformatic methods to create platforms to translate, test and predict the value of actionable healthcare data and information – particularly genetic data, information and knowledge – in “Best Practice” Precision Medicine. Dr.Tonellato’s work includes the use of “Clinical Avatars”, digital representations of patients, in the modeling, simulation and prediction of genetic data’s impact on individual and characteristic patient outcome metrics. Professor Tonellato is constructing the Center for Biomedical Informatics to support self-sustaining, multidisciplinary collaborative research in cancer; cardiovascular and neuro-behavioral diseases.
Dr. Tonellato earned his PhD in applied mathematics from the University of Arizona following study at both the University of Oxford and Hiroshima University. Past positions include joint appointments with Harvard Medical School (Director, Laboratory for Personalized Medicine) in the Department of Biomedical Informatics and Professor of Bioinformatics the Zilber School of Public Health, University of Wisconsin, Milwaukee and Medical College of Wisconsin (founding Director, Bioinformatics Research Center). Dr. Tonellato was Founder and CEO, of Pointone Systems, LLC, the first personalized medicine software company that provided genetic enabled ‘best practice’ clinical decision support systems to hospitals and health care facilities. Previous work includes the creation of the Rat Genome Database (rgd.mcw.edu), the first disease-centric repository of phenotype and genetic data and the Program in Genomic Applications (pga.mcw.edu) a model organism of human disease phenotype-genotype platform designed to aid the animal model research community to create hypotheses through data mining a massive heterogeneous collection of phenotypes, genetic, and microarray expression data from the largest collection of rat and other model organism specialty bred species.
Emmanuela E. Ambrose, Bugando Medical Centre
Emmanuela E. Ambrose is a paediatrician and child health specialist at Bugando Medical Centre teaching and consultant hospital. She serves as the paediatric haematologist for her hospital, which serves 40% of the country’s population. She devotes her clinical practice and research efforts to haematology, especially sickle cell disease. She has supplemented her clinical training with additional experience in haematology obtained from Boston
Children’s Hospital as part of their global hematology/oncology (GLOBE) program and from Cincinnati Children’s Hospital Medical Center where she completed an observership and a haemoglobinopathy counseling course.
Emmanuela documented the birth prevalence of sickle cell disease, and described the haematological and clinical evolution of the disease in Tanzanian infants as part of her master’s thesis and was a co-investigator for the Tanzania Sickle Surveillance Study (TS3), which obtained contemporary sickle cell prevalence data from a geographically representative sample in all regions and districts of northwest Tanzania. In 2017 she was awarded an ASH Global Scholar award to perform a clinical trial entitled “Stroke Prevention with Hydroxyurea Enabled through Research and Education (SPHERE)” which opened enrollment in April 2019.
Dr Tisungane Mvalo, Paediatrician
Kamuzu Central Hospital (KCH) in Lilongwe, Malawi.
Dr Tisungane Mvalo is a Paediatrician based at Kamuzu Central Hospital (KCH) in Lilongwe, Malawi. He is a Senior Clinical Research Investigator at the University of North Carolina Project Malawi (UNCPM) based at KCH, an Assistant Professor with the Department of Paediatrics at the University of North Carolina at Chapel Hill in North Carolina and is also an Honorary Lecturer in the Department of Paediatrics and Child Health of the University of Malawi College of Medicine. He received his specialist training in Paediatrics at the University of Cape Town (Fellow of the College of Pediatricians of South Africa and Master of Medicine in Paediatrics) in South Africa.
His areas of research interest are sickle cell disease and Paediatric infectious diseases including malaria vaccine and pneumonia treatment trials. He is a Co-Investigator on Paediatric sickle cell disease diagnostic cohort and sickle cell prevalence and mapping studies conducted by UNCPM.
Gerard Martin, MD
Cardiologist and the Medical Director of Global Health
Gerard Martin, MD, is a Cardiologist and the Medical Director of Global Health. He has been in practice at Children’s National Health System since 1986. Dr. Martin was promoted to Professor of Pediatrics with Tenure at George Washington University School of Medicine in 1995 and was the Chief of Cardiology from 1997 to 2009. He was named the C. Richard Beyda Professor of Cardiology in 2007.
Dr. Martin was educated at Syracuse University and the State University of New York, Upstate School of Medicine. After a residency at Brown University and the Rhode Island Hospital, he received his training in pediatric cardiology at the Cardiovascular Research Institute at the University of California, San Francisco. He has published over 100 peer reviewed manuscripts, book chapters, and invited publications and has presented abstracts at over 90 meetings. Dr. Martin is an invited lecturer who has traveled to over 100 hospitals and universities within the USA as well as around the world. Additionally, Dr. Martin has been a volunteer on medical missions to third world countries. He has served in a consultant role within the United States as well as in South America, Asia, and the Middle East.
Dr. Martin is board certified in pediatric cardiology, a fellow of the American Academy of Pediatrics and the American College of Cardiology, and a member of the Society for Pediatric Research and the American Board of Pediatrics. He has served or is currently serving on the Sub-board of Pediatric Cardiology, American Board of Pediatrics; the Chairman of the Section Adult Congenital and Pediatric Cardiology, American College of Cardiology; a member of the American Board of Internal Medicine, Sub-board of Adult Congenital Heart Disease; and, the Board of Trustees, American College of Cardiology.
Lisa A. (Hom) Wandler, RN, Esq.
Lisa is the Clinical Program Manager for the Critical Congenital Heart Disease (CCHD) Screening Program and Collaborative Practice Facilitator at Children’s National Health System where she oversees, champions and facilitates quality and performance improvement work to improve outcomes for children with congenital heart disease, and for their families.
As a co-chair of the NewSTEPs CCHD Technical Assistance work group, Lisa guides clinical teams nationally regarding CCHD screening implementation and quality assessment development. She is part of the working group for the American College of Cardiology’s Adult Congenital & Pediatric Quality Metrics.
Prior to starting her work at Children’s National, she had the unique opportunity to work both as a regulatory counsel, focusing primarily on healthcare issues at the state level, and as a pediatric intensive care nurse caring directly for children with critical congenital heart disease.
Lisa holds a juris doctorate as well as baccalaureate degrees in nursing and history from George Mason University and from The College of William and Mary.
Jill Levy-Fisch began her journey to advocacy when she learned comprehensive newborn screening could have identified her youngest son’s rare medical condition, thereby avoiding what became a three-year diagnostic odyssey. Her efforts to speak up for him led her to speak up for the lives of other children.
In 2003, Jill became an active volunteer member of Save Babies Through Screening Foundation (SBTS), an education and advocacy-focused not-for-profit supporting comprehensive newborn screening for all children. She became National Director of Education and Awareness for the organization in 2004 and two years later she took on her current role as President.
At SBTS, Jill was instrumental in the writing and enactment of the Newborn Screening Saves Lives Act of 2007, and she spearheaded work that led the Secretary of Health & Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to issue a letter recommending education and awareness about newborn screening for all parents. Jill served for five years on the ACHDNC Treatment and Follow-up Subcommittee and was a long-time advisor to the New York Mid-Atlantic Regional Collaborative. She is an executive producer of several educational films about newborn screening that have been translated into multiple languages and are in use worldwide and co-produced an educational video for the Newborn Channel. She has also co-authored several articles published in peer-reviewed journals including Pediatrics and has spoken about newborn screening advocacy at international conferences in Morocco and Tanzania.
Jill is a dedicated mother of three and lives in Westchester, NY with her husband of thirty years, Peter.
Dr Kofi A Anie MBE
London North West University Healthcare NHS Trust & Imperial College London
Dr Kofi A Anie is the Psychology Service Lead for children and adults with sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust, and an Honorary Clinical Senior Lecturer at Imperial College London. He began his professional career at King’s College Hospital, London where he pioneered psychological interventions for children with sickle cell disease. He was appointed to his current position in 1998. He is a Fellow of the Royal Society of Medicine and Associate Fellow of the British Psychological Society.
Dr Anie’s is a collaborator on several international initiatives and currently the Community Engagement Core Leader of H3Africa Sickle Cell Disease Genomics Network of Africa (SickleGenAfrica), and involved in the H3Africa BioNet Sickle Cell Disease Ontology Project. He worked with the Sickle Cell Foundation of Ghana to develop and implement of a national counsellor training programme named ‘Genetic Education and Counselling for Sickle Cell Conditions in Ghana’ (GENECIS-Ghana).
Dr Anie’s professional aspiration is owed to a life-long personal and family experience of sickle cell disease. He was awarded with Member of the Most Excellent Order of the British Empire (MBE) for Services to People with Sickle Cell Disease and Thalassaemia in the 2017 Queen’s Birthday Honours.
Natasha Bonhomme brings nearly 15 years of maternal and child health experience to her role at Expecting Health at Genetic Alliance. Since joining in 2006, she has worked to improve the state of women, families and children. For the past 8 years, she has overseen maternal and child health initiatives for the organization, with a particular focus on bringing the families’ perspectives into policy setting around screening and diagnosis, and maternal and child health overall. Natasha has led a range of programs focus on public engagement in newborn screening including the Consumer-Focused Newborn Screening Program, the National Newborn Screening Clearinghouse, and most recently the Newborn Screening Family Education Program. She launched the Expecting Health initiative to bring a range of consumer and professional stakeholders together to address the need for clear, science-based information for families and individuals through tangible, actionable messages.
She spearheaded and oversees the nation’s center on newborn screening education, Baby’s First Test. As director of Baby’s First Test, Natasha has testified before the US Senate Health, Education, Labor and Pension Committee’s Subcommittee on Children and Families on the importance of public education for newborn screening. Natasha serves on a range of committees including: as a Co-Chair of the Genetics and Bioethics Committee, American Public Health Association; the Association of Public Health Laboratories Committee on Newborn Screening and Genetics in Public Health; and the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
Outside of the office, Natasha has been involved with local health clinics for several years and was a Founding Co-Chair of the Developing Leaders Program. She is a Board Member of La Clinica Del Pueblo, a DC based federally-qualified health center focused on the healthcare needs of immigrant communities as well as a Board member of Willow Oak Therapy Center, which provides accessible and affordable mental health services to meet the individualized needs of each person and family.
Afia Achiaa Asamoah Owusu RN, BSN, MPH
Afia Achiaa Asamoah Owusu RN, BSN, MPH, is a Principal Nursing Officer with a Master of Public Health from the Kwame Nkrumah University of Science and Technology, Kumasi-Ghana. She has over thirteen (13) years working experience in the Ghana Health Service in various capacities as founder and Nurse Manager of the Ayeduase Clinic and National Sickle Cell Disease Genetic Counselor amongst others. Currently, she is the Kumasi Metropolitan Health Directorate’s Training Coordinator and the District Nurse Coordinator for the National Newborn Screening Program for Sickle Cell Disease (SCD). She was instrumental in training and establishment of Seven (7) Sickle Cell Disease Management Clinics within Kumasi reducing burden on the KATH Sickle Cell Clinic. She is a regional level facilitator for Adolescent Reproductive Health and Sickle Cell Disease. Mrs. Asamoah Owusu is a Fellow of the Ghana College of Nurses and Midwives (GCNM) and a member of GCNM team developing the Sickle Cell Disease Continuous Professional Development Curriculum for training of health workers in Ghana. She is also an adjunct lecturer, Nursing Department of the Garden City University College Kenyasi. She has good coordination and leadership skills serving her very well in various capacities whilst working with national and international teams including the American Society of Heamatology in the area of sickle cell. Her ambition is to become an international Public Health Specialist of great repute promoting quality health care across Africa and the world over.
Dr. Fred Lorey
Dr. Lorey received his PhD in biological anthropology and genetics from the University of California, Davis. After a professorship at the University of Minnesota, he accepted a position with the California Dept of Public Health, Genetic Disease program. From 2010-2014 he was the Director of the Program, which included both Newborn Screening and Prenatal Screening. He oversaw the expansion of the California Program to include hemoglobinopathies, tandem mass spectrometry, CAH, SCID, and provided background research for the introduction of ALD. Since leaving the Department, he has been working as a consultant, in several areas but mostly consulting with developing countries regarding starting or expanding their newborn screening programs. These include India, Indonesia, Vietnam, China, Colombia, Mexico and Guatemala. He is a member of APHL (Association of Public Health Laboratories), the International Society of Neonatal Screening (ISNS) where he was previously the North American Council representative, and currently serves on the editorial board of their journal, the International Journal of Neonatal Screening (IJNS). He is also a member of the Society of Inherited Metabolic Disorders (SIMD) and served for 5 years on the Committee for Inherited Disorders in Newborns and Children, which is the body that evaluates nominations for inclusion of new disorders in the panel, called Recommended Uniform Screening Panel, or RUSP. He currently resides in the San Francisco Bay area with his two Labrador Retrievers, Raven and Gunda.
Neonatal Screening Laboratory, Saint Joseph University, Beirut
Issam Khneisser has been involved in neonatal screening since 1995 as business unit head of the Neonatal Screening Laboratory at the Saint Joseph University, Beirut. During the past 24 years, he had been pioneer in the G6PD Newborn Screening and a regional reference in Newborn Screening Tandem Mass spectrometry. He has a university diploma in metabolic disease from the medical school of Paris-Descartes. He is ISNS member, he received the Dussault awards in 2008 and currently representing the MENA region in the ISNS council for his second and last mandate 2016-2019. He has (co-)authored several publications on neonatal screening. He did support many regional newborn screening efforts and programs during the last 10 years.
Russell E. Ware, MD, PhD
Dr. Russell Ware is an internationally-recognized expert in the field of pediatric hematology with a special interest in sickle cell disease. He obtained his MD and PhD degrees at Duke University. In 2013, Dr. Ware joined Cincinnati Children’s Hospital Medical Center as Director of Hematology and the Marjory Johnson Chair of Translational Hematology Research. He is also the Director of the Global Health Center. Dr. Ware has had an NIH-funded laboratory since 1990, focusing primarily on genetic modifiers of sickle cell disease and variable responses to hydroxyurea therapy. He has been the national Principal Investigator for several NIH-funded national and international clinical trials using hydroxyurea for children with sickle cell disease, including the recently completed REACH trial. He has led sickle surveillance studies in Angola, Uganda, Tanzania, and Malawi, and currently leads efforts to introduce hydroxyurea safely and effectively into the Caribbean and sub-Saharan Africa. Dr. Ware is a distinguished researcher and author of more than 350 peer-reviewed scientific papers and textbook chapters. He served on the Editorial Board of Blood and the Journal of Pediatrics, and is currently an Associate Editor for Pediatric Blood and Cancer. He was a member of the NHLBI Expert Panel that wrote the 2014 Evidence-Based Guidelines for Sickle Cell Disease.
Dr. Nadia El Idrissi Slitine, is a neonatologist and pediatric cardiologist. Currently, she is a professor in the Medical School of Marrakesh, in the Cadi Ayyad University. She also works in Mohammed VI University Hospital in Marrakesh, in the Mother and Child Hospital. She is the president of APRT, the Association of Pediatricians of Marrakesh and the region since 2015. She is also member of the Association of Marrakesh Medical School’s Professors. She has worked in pediatric clinics at the local and internatioanal levels. She has been interested in implementing screening for CCHD in her country (Morocco) since her visit to the Children’s National Hospital in Washington, DC where she received training under Dr. Craig Sable, in the field of pediatric cardiology. She is also involved in telemedicine teaching and training with the Children’s National Hospital Team in Washington, D.C. where a partnership started with Marrakesh Medical School since 2010. She has been designated as responsible for teaching medical english in the Medical School of Marrakech since 2015. She also supervises the simulation program in pediatrics after receiving a diploma from Sophia Antiapolis University in France in 2012.
Jackie has a passion for improving lives and has spent her entire career in health care, with a special focus on population health. She was named president of Children’s HeartLink in 2015. She previously held leadership positions at the Minneapolis Heart Institute Foundation, where she was chief operating officer and institutional officer for research, and led its Hearts Beat Back program, and at HealthPartners, the largest consumer-governed, nonprofit health care organization in the U.S. A registered dietitian, Jackie has served on the American Diabetes Association (ADA) Board of Directors. She served as editor-in-chief of Diabetes Spectrum and received the Outstanding Educator in Diabetes Award from the ADA in 2018. Jackie has an M.S. in nutrition from the University of Minnesota.
Annamarie is an Economist, Humphrey Policy Fellow and co-founder of the Newborn Foundation.
Founded after her own newborn was diagnosed with critical congenital heart defects, the Newborn Foundation focuses on developing and implementing programs, policies and technologies to improve early diagnosis and access to care for babies. Under her leadership, the organization has been recognized for spearheading U.S. policy and advocacy efforts to be the first nation to implement universal newborn screening for congenital heart defects – the most common and deadly birth defect. Annamarie was appointed by the U.S. Secretary of Health and Human Services under the Obama Administration to the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and has drafted more than 40 pieces of health legislation and authored more than 200 policy briefings on the importance of advancing early detection and treatment of neonatal and pediatric health conditions.
Annamarie has given presentations on newborn screening, health policy and technology innovation in global health at 65 domestic and international symposia, including at the United Nations and with Ministries of Health in 4 countries. She is an advisor to the WHO’s Essential Medicines (EML) and Essential Medicines for Children (EMLc) program and leads the Newborn Foundation’s formal commitment to reduce preventable newborn mortality as part of the UN Secretary-General’s Every Woman, Every Child initiative. Under her leadership, the BORN Project (Birth Oximetry Routine for Newborns) was selected as one of only 14 global innovation projects from around the world addressing the UN Sustainable Development Goals. Thus far, the program has provided point of care newborn screening training and implementation for more than 1,200 health workers across 200 medical facilities in 13 low and middle-income countries. Annamarie is co-chair of the Newborn Translational Research Institute and its innovation incubator, developing scalable medical technologies for resource-poor settings. She holds a degree in Economics from Iowa State University and did her master’s work in Health Economics.
Olav Eielsen (born 10 May 1946) is a Norwegian physician. He is a specialist in anesthesiology and has been head of the emergency medicine department at the Stavanger University Hospital, Norway. He has had a leading role in developing emergency medicine in the western part of Norway, and he has been engaged, and have had a leading role, in several national projects related to emergency medicine and developing new technologies. He is the founder of the air ambulance system in the western part of Norway, and the founder of The Regional Centre for Emergency Medical Research and Development, at the Stavanger University Hospital.
Etienne DEMBELE (Malian, born on April 29, 1969)
Representative NorSahel in Mali since 2015
Development Consultant, promoter of Enterprise ACCSURH-CONSULTING, Development Consulting firm created in 2006 in Bamako conducting studies, diagnoses, evaluations on behalf of the private sector, public and para-public structures, NGOs, and associations in the socio-economic and organizational areas.
About 30 years of experience in development activities, including 15 years in management and technical assistance in the implementation of projects in the fields of health, micro-finance, capacity building, etc. in Mali, Cameroon and Central Africa.
Board member for national and international organisations.
Dr. Hassan Ghazal
ICT Department of the Center for Scientific and Technological Research, Rabat
Dr. Ghazal Hassan is Associate Professor at the ICT Department of the Center for Scientific and Technological Research in Rabat. He is Member and coPI of the H3 (Human Health and Heredity) African Bioinformatics Network (2012- Present), sponsored by the US National Institute of Health (NIH). He coordinated the adhesion of Morocco to the H3 consortium. He was Observer member for Morocco at the European Bioinformatics Network Board (2013-14). Board member of the Moroccan Society for Newborn Screening. He was nominated for 2 terms Ambassador for Morocco of the American Society for Microbiology (2016-2021). He is President of the Moroccan Society for Telemedicine and eHealth (2011-Present), and Board member of the International Society for Telemedicine and eHealth (2016-Present). Fulbright alumnus/collaborator at the US National Center for Biotechnology Information (2009-2016). 7 of his PhD students are also fulbrighters. His research interests include Genomics, Bioinformatics and Medical Informatics as applied to various health topics including cancer and newborn screening. He is the coordinator of the first accredited Master program in Health Informatics and Telemedicine to be launched next academic year at the University Mohamed VI of Health Sciences in Casablanca in partnership with the US National Library of Medicine. Dr. Ghazal served in scientific committees of many international conferences in telemedicine and he is a member of the editorial board of the International Journal of Bio-Medical Informatics and e-Health. Dr. Ghazal is PhD in Molecular Genetics, MSc. in Molecular Biology and Biotechnology, Pharmaceutical Medicine, Bioinformatics (Belgium) and International Law (Spain). He did 3 postdocs in Genomics and Bioinformatics in the USA (University of Delaware, University of Southern Illinois, National Institutes of Health).
Fenna Builler is a Telecommunication Engineer graduated from ESSTIN in France. She became President of Moroccan Association against Cystic Fibrosis (CF) when her youngest son has been diagnosed CF after 4 years of unexplained health issues and lot of hospitals stays.
Since then Fenna has been heavily involved in talking about this very serious genetic condition that causes severe damage and kills still very early in life children in Morocco while life expectancy in the developed world is between 42 and 50 years.
Her active research on the subject resulted in a partnership with the Alliance of Rare Disorders in Morocco (AMRM) lead by Dr. Moussayer. Fenna has been a speaker during the 1st national day of rare disorders held on Feb 24th 2018. She established partnerships with biologic laboratories in order to help families with low income and having a CF child.
Fenna became the reference in CF in Morocco after participating to TV and radio shows talking about it. She has given presentations in many Moroccan medical symposia concerning CF and the importance of its early diagnosis.
Her continuous meetings with the ministry of health as well as other health care organizations in Morocco aims to improve the support to families so that they have the right to benefit from medical treatments as should do any Moroccan citizen.