David Eckland, BSc MB PhD FRCP

Chairman SAB

Dr. Eckland has been head of metabolic disease clinical research at GSK. His experience ranges from preclinical stages to post marketing studies. He has worked in senior positions (managing director of Takeda Europe R&D, and R&D director, Ark Therapeutics), where he developed pioglitazone, among other drugs. Dr Eckland has covered many therapeutic areas, including oncology, rheumatology, cardiovascular, urology and metabolic disease. He has supervised numerous phase IV clinical trials, interacting with commercial and business development colleagues. He has also lectured on clinical trial design at University College, London.

Patrick Aubourg, MD

Clinical Expert X-ALD

Dr. Aubourg is professor of pediatrics at the Medical University Paris-Sud (France), head of the Pediatric Neurology Department at the Hospital Bicêtre (Le Kremlin Bicêtre, France) and director of Inserm Research Unit UMR1169 at the Medical University Paris-Sud/Paris Saclay University (France). He is a member of several networks aiming to develop new therapeutic approaches in neurodegenerative diseases, in particular in the field of leukodystrophies.

Florian Eichler, MD

Clinical Expert X-ALD

Dr. Eichler is associate professor of neurology at Harvard Medical School (USA), assistant in neurology at Massachusetts General Hospital, director of the Leukodystrophy Clinic and director of the Center for Rare Neurological Diseases. Dr. Eichler studies monogenetic lipid metabolism disorders of the nervous system at the Massachusetts General Hospital and Harvard Medical School. His research focuses on the genetics of peroxisomal disorders, lipid metabolism and spatial aspects of nuclear magnetic resonance spectroscopy. Current projects include analyzing metabolic changes seen in the brain by MR measures and determining the neurotoxicity of newly discovered atypical sphingolipids.

Marc Engelen, MD

Clinical Expert X-ALD

Dr. Engelen received his MD from the University of Amsterdam (The Netherlands) in 2002. He trained as a neurologist and subsequently specialized in pediatric neurology at the Academic Medical Center (AMC) in Amsterdam. He obtained his PhD on adrenoleukodystrophy in 2012. He is currently a member of the medical staff in the Department of Neurology and the Department of Pediatrics. He has a special interest in peroxisomal disorders; the AMC was recently designated the national expert center for this group of diseases. In 2014 he received a Veni grant from NWO (The Netherlands Organisation for Scientific Research) to study the natural history of adrenoleukodystrophy and identify predictive biomarkers in the onset of cerebral ALD.

Gerald Raymond, MD

Clinical Expert X-ALD

Dr. Raymond received his medical degree from the University of Connecticut (USA). He trained in pediatrics at Johns Hopkins University and in neurology at Massachusetts General Hospital. He completed his training in clinical genetics at Harvard University. Dr. Raymond is a pediatrician, a geneticist and a neurologist with a special interest in developmental and neurogenetic disorders affecting children and adults. He is currently working at the University of Minnesota Masonic Children’s Hospital. Dr. Raymond’s work focuses on the diagnosis, care and treatment of all aspects of ALD and other peroxisomal disorders. Recently, he has advanced newborn screening of ALD and clinical trials on the natural history and treatment of all aspects of ALD.

Joan Aymamí, PhD

Co-founder

Dr. Aymamí is one of the pioneers in the field of bio-entrepreneurship in Spain. He led Crystax Pharmaceuticals as Founding Manager since its foundation on 2002 until it was acquired by Oryzon Genomics. This merger has been one of the main operations of Spain’s biotech sector. Furthermore, Joan has a long and successful career in the field of Structural Biology, working for first class institutions such as University of Cambridge, MIT and Institute of Cancer Research as well as co-authoring numerous publications and patents. Currently, Joan is a scientist at Universitat Politecnica de Catalunya.

Xavier Badia, MD MPH PhD

Pricing, Market Access, Health Economics & Outcomes Research

Dr. Badia is an entrepreneur and business leader medically and economically qualified, specialized on the field of rare diseases and niche diseases (mainly oncology, endocrinology, metabolic and pediatric) from the clinical and economic perspective. He started as head of research at the Catalan Institute of Public Health, and has held different positions both in the public and private sectors with a variety of Senior Executive and Leadership roles, providing strategic advice and research in P&R, Market Access, Health Economics and Outcomes Research, and creating value based products to treat rare disease in the EU and US markets. He is an active member of ISPOR rare disease Special Interest Group and Advisor of the Spanish Rare Disease Registries Research Network of the Instituto Carlos III. He has published more than 200 scientific articles.