Ukraine – ELA Scientific committee statement
“The European Leukodystrophy Association international scientific advisory board wishes to express its concern and sympathy for people and families affected by leukodystrophy and the war in Ukraine. We understand the great difficulty of taking care of children with rare disease, especially without access to proper hospital care or medicines.
Our board members will endeavour to provide direct medical support to refugees as well as hospitals and healthcare providers in the region that can benefit from specialist medical advice on care of leukodystrophy patients.
This is a time of empathy and unity for all people and families affected by leukodystrophy”
The role and procedure of ELA International Scientific Committee
A new scientific committee for ELA
The scientific committee of ELA International has 15 members, experts in leukodystrophies. It is chaired by Pr. Florian Eichler, Medical Neurologist Director of the Department of Leukodystrophies at Massachusetts General Hospital for Children – Boston, USA.
Nicole Wolf, nuropediatrician doctor at the VU University Medical Center of Amsterdam – Amsterdam, The Netherlands, has been appointed Vice President.
The scientific council is renewed. Today Magali Pettazzoni joins the committee, her expertise focuses on hereditary pathologies of metabolism and red blood cell, at CHU Lyon, France, and Alessandra Biffi, Director of the gene therapy program at the Boston Children’s Cancer and Blood Disorders Center – Boston, USA.
The scientific committee continues its mission to support ELA International in its research activities by providing its scientific expertise for the evaluation of projects related to the annual call for proposals.
Pediatric and Adult Neurology
Pediatric Neurology, Neurosciences
Professor of Pediatric Neurology
Professor of Pediatrics
Professor of Physiology
Molecular Biology and Inflammatory Diseases
Academic Medical Center Principal Investigator
Associate Professor and Senior Neuropathology Consultant
MD, PhD Neurologist
Neuro-Genetics and Metabolism
Department of Biochemistry and Molecular Biology
MD, PhD, ScD
Neurology Program Director of the Leukodystrophy Center of Excellence