The Advisory Board
The Advisory Board it is composed of external independent experts representing the major stakeholders involved in the clinical management of patients with rare diseases, in evidence based medicine, and in developing health care policies. The Advisory Board will give advice to the General Assembly on major topics and will evaluate the project advancements and the sustainability plan. Moreover it will improve contacts with relevant stakeholders.
Advisory Board
Veniamin Chernov - Federal Research Center of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev, Russia
Hugh J.S. Dawkins - Public Health Division and Clinical Services, Department of Health Government of Western Australia, Australia
John Forman - New Zealand Organisation for Rare Disorders, New Zealand
Steven Groft - National Institutes of Health - Office of Rare Diseases Research, USA
Michele Hilton Boon - University of Glasgow, United Kingdom
Edmund Jessop - London Strategic Health Authority- United Kingdom
Svetlana Karimova - National Association of the Rare Diseases Patients' Organizations “GENETICS”, Russia
Oleg Kvlividze - Georgian Foundation for Genetic and Rare Diseases, Georgia
Sonja Kersten - G-I-N - Guidelines International Network, United Kingdom
Albert Matevosyan - Yerevani Mkhitar Heratsu Anvan Petakan Bjshkakan Hamalsaran, Armenia
Vitaliy Matyushenko - Foundation Children with Spinal Muscular Atrophy, Ukraine
Antoni Matilla-Dueñas - Fundació Institut d’Investigació Sanitària Germans IGTP i Pujol, Spain
Vadim I. Mazurov - Saint Petersburg State Medical Academy named after I.I. Mechnikov, Russia
Federico Micheli - Hospital de Clínicas, Universidad de Buenos Aires, Argentina
Kathryn North - Institute for Neuroscience and Muscle Research, Australia
Petr Novikov - Moscow research Institute of pediatrics and children's surgery, Russia
Ugur Ozbek - Istanbul University, Turkey
Analia Porras - Pan American Health Organization (PAHO/WHO), USA
Alexey A. Sokolov - Institute of Experimental Medicine of the North-West Branch of the Russian Academy of Medical Sciences, Russia
Joan-Lluis Vives-Corrons - Consorci Institut d’Investigacions Biomèdiques August Pi i Sunyer, Spain