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Connection between Aplastic Anemia and PNH

Connection between Aplastic Anemia and PNH

22/03/2023 17:30

Speakers: Carlo Dufour, Pascale Burmester

Target: Patients
Subnetworks: Bone marrow failure
Disease Groups: Paroxysmal nocturnal hemoglobinuria, Rare acquired aplastic anemia (Other than PNH)

Professor Carlo Dufour works at G.Gaslini Research Children's Hospital, Genova, Italy, the largest, multi-specialist pediatric hospital of the country, where he chairs the Hemo-Onco- HSCT Pole and the Hematology Unit where have seat the national Registry of Neutropenia, the national Registry of the Alps and related disorders and the national Data Base of Fanconi Anemia. He founded the Marrow Failure Syndromes Study Group within the Italian Pediatric Hemato-Oncology Association (AIEOP). He is the author or co-author of over 200 international publications and of various haematology textbooks and textbook chapters. He acts as a reviewer for top-ranking international journals including New England Journal of Medicine, Journal of Clinical Oncology, Leukemia, Clinical Immunology and Blood. He serves as an expert evaluator for different institutions including the French Registry for Rare Diseases, the Fanconi Anemia Research Fund INC (US), the Leukemia and Lymphoma Research Foundation (UK), the American Society of Hematology Education Program. He acted as the chairman of the Working Party of the Severe Aplastic Anemia (WPSAA) and as a Board member of the European Society for Blood and Marrow Transplantation (EBMT). He currently serves as the chairman of the Scientific Working Group on Granulocyte and Constitutional Marrow Failure Disorders of the European Hematology Association (EHA). Within EHA he is a member of the SWG Unit, of the Education Committee and the Guidelines Committee. In 2015 he received by the Fanconi Anemia Research Fund. INC (FARF) is the discovery award for participating in the identification of gene FANCT. Since December 2019 is a member of the Scientific Committee of the American Society of Hematology.

In December 2019 he was awarded for scientific contribution in Fanconi Anemia by the Spanish "Fundacion en la Anemia de Fanconi". In August 2020 has been awarded by the EBMT with the Van Bekkum award, a recognition reserved for best scientific communication of the year, as Co-PI of the prospective randomized trial RACE (Comparison of classical IST ± Eltombopag) in Severe Aplastic Anemia.

Pascale Olivia Burmester is born in 1971 in Germany and has a Master of Educational Science. She is a AA and PNH patient, transplanted in 2013 who supported since 2005 by co-founding a self-support forum. She is CEO of the German foundation "Stiftung lichterzellen", where she provides patients and families with information, carries out multiple projects for patients and families and works as a patient advocate. As a member of the board of the PNH Global Alliance, she has a seat in the PNH Registry and is specially engaged in the scientific development of a AA/PNH-specific Quality of Life questionnaire. Finally, she is involved in QoL-study projects.

Registration is closed for this webinar