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