Speakers:
Amelia Hursey
Research Manager, Parkinson’s Europe
Amelia joined the Parkinson’s Europe team in Jan 2022 as Research Manager. Since then she has developed Parkinson’s Europe’s Research Strategy, embedding a volunteer Research Steering Group into the organization and helping to increase the presence of Parkinson’s Europe in the clinical research world. She is also focused on bringing new initiatives to the table, such as the Parkinson’s Europe’s Engagement Network, which better connects the Parkinson’s community with research across Europe. Parkinson’s Europe is now a partner member of EUPATI, of the non–profit coalition to support advancements of DMT’s for Parkinson’s, Dementia with Lewy Bodies and Biologically related disorders, and the Critical Path for Parkinson’s. She has been working in the field of neurodegenerative research since 2009 and is a Patient Organizations board member with EUPATI since Sept 2023. She previously worked for the UK NIHR’s DeNDRoN delivering clinical trials and then at Parkinson’s UK from July 2015 as Research Participation Lead. She was responsible for initiatives to increase research participation for people affected by Parkinson’s, healthcare professionals and researchers, and created the innovative Parkinson’s UK Take Part Hub and co-produced the Staying Connected toolkit in collaboration with the HRA UK.
Taylor Kane
Patient Advocacy Advisor, CENTOGENE
Taylor Kane is a solution-driven patient engagement consultant with over ten years of experience in championing the needs of the rare disease community and serving as an intermediary between patients, researchers, and industry. Her passion for rare disease advocacy began in grade school, shortly after her father died from the rare X-linked condition adrenoleukodystrophy (ALD) and she learned that she was a genetic carrier of the disease. Over the years, Taylor has become deeply involved in the rare disease community, speaking at numerous rare disease-related events and contributing to a variety of campaigns as a thought leader and voice for the rare disease community.
Peter Bauer, MD
Chief Medical and Genomic Officer, CENTOGENE
Prof Peter Bauer, MD, serves as CENTOGENE's Chief Medical and Genomic Officer, where he combines an extensive clinical and medical understanding of genetic testing with an excellent knowledge of the latest scientific developments. Peter is passionate about turning medical questions into complete and fast analytical processes – ensuring that medically-driven results are brought to clinicians and patients immediately. He received his board certification in Human Genetics in 2006 and previously headed the Molecular Diagnostic Laboratory at the Institute of Medical Genetics and Applied Genomics at the University Hospital Tübingen. Peter has authored more than 250 publications in neurogenetics, oncogenetics, cardiogenetics, and sequencing technology.
Moderator:
Laura Dormer
Editor, The Evidence Base
Editor in Chief, Journal of Comparative Effectiveness Research
Editorial Director, Becaris Publishing
