Dr. Hardy is a pediatric psychologist and Director of Behavioral Health Services in the Divisions of Hematology, Oncology, and Blood and Marrow Transplantation at Children’s National Hospital in Washington, DC. He is also an Associate Professor of Pediatrics and of Psychiatry and Behavioral Sciences at the George Washington University School of Medicine and Health Sciences. He earned his Ph.D. in clinical health psychology from the University of North Carolina at Charlotte, completed an internship at Jackson Memorial Hospital, and completed a psychology fellowship in pediatric hematology, oncology, and BMT at Children’s National Hospital. At Children’s National, Dr. Hardy directs behavioral health services for youth with sickle cell disease, including art therapy, music therapy, and school support services. He provides direct clinical care to children, adolescents, and young adults with sickle cell disease through their integrative pain clinic, meets with patients in the context of transformative therapies, and provides supervision and mentorship to psychology trainees. Dr. Hardy’s research has been funded by nonprofit organizations including the Doris Duke Foundation, as well as by the National Institutes of Health. His work aims to improve early detection of sickle cell-related changes in neurocognitive functioning, develop and test interventions to ameliorate disease-related neurocognitive deficits, and enhance understanding of the interactions between neurocognitive functioning, pain, and quality of life in sickle cell disease.
 

Biree Andemariam, M.D. is Professor of Medicine and the American Red Cross Endowed Chair in Transfusion Medicine at the University of Connecticut School of Medicine. She is a physician scientist in the Division of Hematology/Oncology, Founding Director of the New England Sickle Cell Institute (NESCI), and Director of the Connecticut Bleeding Disorders Center. NESCI’s mission is to provide a medical home for adults with SCD as well as a transition destination for children with SCD. In addition to treating over 350 adults with SCD, the center is also home to numerous clinical and translational research studies. Dr. Andemariam is lead principal investigator of 3 global SCD clinical trials and has extensive experience in clinical trial design, endpoint development, recruitment, and implementation. In the midst of the COVID-19 global crisis, she mobilized and chaired an international committee of experts in the development and worldwide dissemination of guidelines on managing patients with SCD during the pandemic. Dr. Andemariam is the immediate-past Chief Medical Officer of the Sickle Cell Disease Association of America, Inc. During her tenure at the SCDAA, she has been awarded the Chairman’s Award three times (2019, 2020, 2022) for her outstanding and dedicated board service centered around national programmatic development, disease education/awareness, and legislative advocacy.

Dianaba BA works as a public health consultant and used to be the former CEO of the French Federation for Sickle Cell Disease and Thalassemia Patients’ Organizations (FMDT SOS Globi). She is French and lives in Marseille.  She was born with SCD, a severe form (SS) and has suffered multiple complications. Despite the disease, she has always been very active and managed to travel a lot. She’s studied applied languages and project management in university (a master’s degree) and when she became old enough to realize the burden the disease can represent for the patients and their families, she started advocating as a volunteer at a local level in her city, then at a national level, and now globally as a member of ESCF and ERN.  To add a few words about her, she is the happy mother of an eight months baby and she enjoys cooking, traveling, learning new languages and reading. Besides her commitment to patients with Sickle Cell Disease, she is involved in different projects to support refugees and asylum seekers.

Dr. Ziad Solh is a hematologist and transfusion medicine specialist at London Health Sciences Centre (LHSC) in Canada, and an Associate Professor at Western University. He received his Doctorate in Medicine from the University of Ottawa and his hematology residency training at McMaster University. He then completed the Clinician Investigator Program and a Master of Science degree in Health Research Methodology at McMaster followed by a Transfusion Medicine fellowship with Canadian Blood Services. He currently directs the Adult Hemoglobinopathy Program at LHSC where he sees patients with sickle cell disease and thalassemia, and he is the head of the Transfusion Medicine Division in the laboratory.

Dr. Madeleine Verhovsek, BSc MD FRCPC is a Professor of Medicine, and Pathology & Molecular Medicine at McMaster University. She is the Director of the Adult Hemoglobinopathy Program at McMaster University Medical Centre and the Chief of Medicine at St. Joseph’s Healthcare Hamilton. Dr. Verhovsek is on the board of directors and executive of the Canadian Haemoglobinopathy Association.

Dr 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 the Deputy Clinical Director for the West London Haemoglobinopathy Coordinating Centre.

Dr Anie began his professional career at King’s College Hospital, London where he pioneered psychological interventions for children with sickle cell disease. He is a Fellow of the Royal Society of Medicine and Associate Fellow of the British Psychological Society; his other professional affiliations include the British Association of Behavioural and Cognitive Psychotherapies, and American Psychological Association.

Dr Anie has been involved in development of national clinical guidelines and standards of care for sickle cell disease in the UK and Africa. He is currently a Scientific Advisor to Sickle Cell Society.

Dr Anie is a collaborator on several international initiatives including the Ethics and Community Engagement Core Lead of Human Heredity and Health in Africa (H3Africa) Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network. He is presently a visiting faculty at the West African Genetics Medicine Centre (WAGMC) at the University of Ghana. His professional aspiration is owed to a life-long personal and family experience of sickle cell disease. He was awarded with Member of the Order of the British Empire (MBE) for Services to People with Sickle Cell Disease and Thalassaemia in the 2017 Queen’s Birthday Honours.
 

Dr. Ivy uses his personal and professional experiences to improve care for individuals with health conditions, including sickle cell disease, by working collaboratively to strengthen the public health infrastructure. Currently, Dr. Ivy works with the Association of Black Cardiologists, Inc (ABC) as the Health Education Coordinator. He also currently serves as the Vice Chief Medical Officer for the Sickle Cell Disease Association of America (SCDAA). Prior to joining the ABC and SCDAA, Dr. Ivy worked with the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) as the Program Director of the Hemoglobinopathies Program, which included the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Thalassemia Program. Dr. Ivy worked at the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health where he was part of the team that developed the NHLBI Sickle Cell Disease Treatment Recommendations of 2014. Dr. Ivy completed his medical school education at East Carolina University School of Medicine. After starting a residency in Pediatrics, Dr. Ivy realized his interest in public health and attended the University of North Carolina at Chapel Hill School of Public Health where he received his Masters in Public Health with honors.

John Lawal is a multifaceted creative force who bridges the worlds of information technology and artistic expression. Based in Oxford, UK, John is a published author, poet and motivational speaker who inspires audiences across the UK, Ireland, and beyond.

His writing explores a variety of themes, including poetry, spirituality, positive thinking, soul exploration, and romance.

He also writes under the pen name "The Whisperer."

Lora Ruth Wogu is the founder and CEO of Sickle Cell and Thalassaemia Ireland, a national patient and parent support and advocacy organisation for raising awareness and advancement of patients’ quality of life with Sickle Cell disease and Thalassaemia disease in Ireland, Europe and global level.
She is also founder and Chief Operations Officer of the European Sickle Federation, an umbrella network of patient organisations advocating for Sickle Cell Disease advancement in Europe.

Lora Works at St Vincent’s University hospital professionally, though spends most of her free time advocating for Sickle Cell Disease and Migrant Health.
She holds a BSC in Healthcare Management, a MSc in Quality and Patient Safety in Health Care management and various professional certificates.
Other Patient and Public Representative roles
As a patient advocate, public and community leader, Lora advocates and represents on various committees, subcommittees (not listed) and initiatives which includes;
1. Public Patient representative -Ignite Network Public Advisory Board.
2. Public Voice- Department of Health National Screening Advisory Committee (NSAC) since 2022
3. Patient representative - Health Services Executive Patient Forum since 2022
4. ESCF representative - EURORDIS New born Screening steering Committee for rare diseases.
5. Patient representative -European Medicine’s Agency Scientific board since 2016,
6. Patient representative -St James Hospital Patient Representative Group since 2016,
7. Public representative -National Screening Service Ireland PPP since 2019
8. Board member - Scoil Sinead Patronage for Autism inclusion in main stream education
9. Board Member Griffeen Community College since 2018