Rare Diseases and Orphan Drugs

Alba Ancochea is the CEO of Spanish Federation of Rare Diseases and its Foundation. She is a EURORDIS board of Directors member , as well as member of the Rare Diseases International Advocacy Working Group, member of the DITA (Drug Information ,Transparency and Access) Task Force, representative of the Council of National Alliances and supporting the Ibero-American Alliance of RD. She belongs to the CIBERER (Spanish Biomedical Research Consortium on RD )Scientific Advisory Board. She has completed undergraduate and masters studies in psychology, special needs teaching and management of NGOs.

Drug Development and Clinical Research

Alastair Kent was the executive director of Genetic Alliance UK, the British umbrella body for over 200 patient groups supporting that with rare and genetic disorders. Since retiring from Genetic Alliance UK he has continued his involvement as an independent advocate in health policy and service development that will improve support for those affected or at risk from these conditions.

rare and genetic disorders

Don Van Dyke is Chief Operating Officer at Cloud Pharmaceuticals. In his earl career, he held increasingly responsible general management, business development, and executive positions at American Hospital Supply, Dade Diagnostics, Eastman Kodak and Millipore Corporation.Van Dyke's work at the intersection of biological science and computer science began at startup Bio Image Corporation. The company became the market leader in image-based genomics and proteomics under his leadership as VP sales, VP worldwide marketing and sales, general manager, and CEO. The company merged with another firm and went public on the NASDAQ. He has had executive roles at Molecular Mining Corporation, a life science data mining company and INCOGEN, a Bioinformatics company and has advised more than a dozen start-ups and government agencies.

Sara Tylosky, CEO of Farmacon (www.farmacon.co) has over twenty years of experience in strategic management & global marketing in the pharmaceutical & biotech industries. Farmacon works with sponsors, from large pharmas to start up biotechs, through their network of expert consultants to tailor solutions for clinical trial research projects. Working in phase 2-4 trials, their model is to dispatch expert physicians and logistical support on the ground in each country to bring real-time feedback, provide strategic intelligence, uncover issues, and resolve problems to reach enrolment early and reduce study costs. This allows for more accurate data to be collected. Their particular specialty is in rare disease for projects that need assistance outside of us. Sara holds a master’s in business from Florida Atlantic University and an undergraduate degree from Whitman College.

Michael S. Wolfe received his B.S. in chemistry from the Philadelphia College of Pharmacy and Science and Ph.D. in medicinal chemistry from the University of Kansas. After postdoctoral stints at the University of Kansas and the NIH, he joined the faculty of the University of Tennessee in Memphis. In 1999, he moved to Harvard Medical School and Brigham and Women’s Hospital, where his work focused on understanding the molecular basis of Alzheimer’s and related disorders and identifying effective approaches for pharmacological intervention, becoming Professor of Neurology in 2008. He returned to the University of Kansas in October of 2016 as the Mathias P. Mertes Professor of Medicinal Chemistry. Awards for his work include the Sato Memorial International Award in bioorganic and medicinal chemistry from the Pharmaceutical Society of Japan, the MetLife Award for Biomedical Research, a Zenith Fellows Award from the Alzheimer’s Association, and the Potamkin Prize from the American Academy of Neurology.

Alzheimer’s Disease

Dr. KrupaTorne is among the few super-specialists who have been internationally trained in the field of Paediatric Neurology. At present, she is heading the Department of Neurosciences at Surya Children’s multispecialty Hospital in Mumbai, India. She has completed her Fellowship in Paediatric Neurology and Epilepsy from Maharashtra University Health Sciences at Lokmanya Tilak Municipal Hospital and Lokmanya Tilak Municipal Medical College, Mumbai. She has had a brief stint at the University College London Hospital, a premier academic institution cum hospital in the UK. She has been trained in Paediatric Neurology at Birmingham Children's Hospital where she successfully completed her International Fellowship in Paediatric Neurology, Epilepsy and Neurorehabilitation. She was honored by International Bursary from European Paediatric Neurology Society with an opportunity to attend one of the prestigious courses in Paediatric Neuromuscular disorder and Neonatal Neurology at Budapest in Hungary. She is affiliated with many International and National Paediatric Neurology and Epilepsy associations.

Her research interest is in complex paediatric epilepsies, ketogenic diet and paediatric movement disorder.