Gathering Agenda

Stay tuned for the gathering agenda

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Donnell Ivy – Americas – North Region

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 is the Director of Community Programs with the Association of Black Cardiologists, Inc (ABC). 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 Heath where he was part of the team that developed the NHLBI Sickle Cell Disease Treatment Recommendations of 2014. Dr. Ivy completed his medical school training 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 Master in Public Health with honors.

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Ewakat Suwantaroj – Western Pacific Region

Ekawat was diagnosed with severe hemophilia A when he was four months old. His childhood life was difficult, and he did not want other families to experience the same type of hardship. In 2004, he started to support the hemophilia community in Thailand as the president of the Thai Hemophilia Patient Club. He supported Hemophilia Early Treatment Program in Thailand. This program started to use Factor Concentration for all Thai hemophilia patients. The efforts of this program have not only changed the medical way of treating hemophilia, but it has also enabled patients to learn about home treatments such as self-infusion and joint exercises. Education became the most important part for patients and families as they learn how to successfully live with hemophilia with limited resources and Ekawat volunteered to demonstrate self-infusion. Using his professional ability, he also creates a Hemophilia newsletter and other media materials as a tool to communicate with patients across the country. He is currently the vice president of the Thai Hemophilia Patient Club and a Committee member of the National Hemophilia Foundation of Thailand. He also works with other local support groups to set up a patient group such as the Thai Rare Disease Foundation (ThaiRDF) so as to collectively raise social awareness of the challenges faced by the chronic disease community. He works with the international hemophilia community, Asean Hemophilia Networks (AHN), and has participated in several international workshops with the World Federation of Hemophilia (WFH) over the last decade. Recently, he is selected to join the World Federation of Hemophilia (WFH) Board of Directors as a lay member.

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Kibet Shikuku – African Region

Dr. Kibet Shikuku is a hematopathologist from the University of Nairobi. He is currently the president of Kenya Hemophilia Association (KHA) and a consultant pathologist in various hospitals within the country. As part of his daily routine, he lectures at the faculty of medicine while supporting clinical work at Kenyatta National Hospital (KNH) based in Nairobi. He also supports hemophilia and sickle cell programs in Kenya and Tanzania through accelerated care for hematological disorders in both countries, which is supported and driven by various stakeholders. He also supports the ministry of health by seating on various expert committees including HIV, Hemovigilance, blood and blood products committee at the pharmacy, and poisons board just to mention a few. Throughout his medical practice and career, he has worn various awards including being declared the best community leader, leading the hemophilia association to win the best twinner award from WFH, initiating and supporting the first bone marrow transplant program in Kenya at the Nairobi West hospital and also one among few clinicians supporting red cell exchange for individuals living with sickle cell disease and apheresis in general in the region. Lately, Dr. Kibet is closely supporting the hematology technical working group at the ministry of health as the deputy chair to ensure that noncommunicable diseases are supported directly by the government through adequate funding as well as improved quality of medical services offered to individuals living with sickle cell disease and hemophilia patients. He has petitioned the Kenyan parliament to ensure that these conditions are attended to in order to ameliorate undue suffering from these conditions. He also supported and participated in the development of the national treatment guidelines for the two diseases. Some of his key interactions with stakeholders include but are not limited to; KNH, Moi Teaching and Referral hospitals, Kenyatta University teaching and referral hospital, WFH, Novo Nordisk Hemophilia Foundation, Haemophilia Scotland, Roche Kenya, etc. As the president of KHA, he has lobbied for donations amounting to Ksh 2 billion and other funding streams of about ksh 200 million for capacity building.

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Marimilia Pita – Americas – Latin America

Dr. Marimilia Pita is a pediatric oncologist/hematologist. She oversees the Medical Residency Program in the pediatric hematology department at the University of Campina and in the division of hematology at the Samaritano hospital both in Sao Paolo, Brazil Dr. Pita is the founder of the Pediatric Committee of the Brazilian Association of Hematology and Hemotherapy (ABHH) and President/ Chief Executive Officer of the Lua Vermelha - Sickle Cell Disease Association- a patient organization. She is the first president of the Brazilians’ Congresses of Pediatric Hematology- ABHH and similar to Pediatric Oncology, she advocated for Pediatric Hematology to be a certificate program that is recognized by the Brazilian Medical Association and by the Federal Council of Medicine in Brazil. To achieve this laudable goal, she advanced a partnership with both pediatrics and hematology and made this a joint venture between the Brazilian Association of Hematology and Hemotherapy and the Brazilian Association of Pediatrics. Dr. Pita is a member of the Anemia Committee of the Brazilian Association of Hematology and Hemotherapy. A staunch advocate, Dr. Pita is committed to advancing equitable health access to all individuals affected by hematological disorders.

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Author - InHeBloodDisor