Podcast

Ben has been involved in the rare disease community for a number of years – with both Ehlers-Danlos syndrome and genetic Parkinson’s disease present in his family. In his personal life, he has also been involved with young cystic fibrosis and osteosarcoma patients going through diagnosis and treatment. Ben leads the Communications team at CENTOGENE, where he is grateful to have an opportunity to work together on a mission to find effective, data-driven solutions for life-changing answers for rare and neurodegenerative disease patients around the world.

Prof. Peter Bauer, M.D., 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. He currently serves as CENTOGENE's Chief Medical & Genomic Officer.

Taylor Kane has spent most of her life as a rare disease advocate. She currently serves as Community Engagement Manager at AllStripes, a healthcare technology company dedicated to uncovering new treatments for people with rare diseases.In addition, she is the founder and executive director of Remember The Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders. Taylor’s activism began when she was in grade school, shortly after her father died from the rare X-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Not only did Taylor help raise substantial money for ALD research, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD in New Jersey. At the age of fourteen, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. Since college, she has served as a leader of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR), educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. Taylor is a summa cum laude graduate of The George Washington University who resides in New Jersey, but spends several months each year in the United Kingdom. She is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.