Taylor Kane

Background

About Taylor Kane

Taylor Kane is a solution-driven patient engagement and advocacy consultant with over twelve years of experience championing the needs of the rare disease community and serving as a trusted intermediary between patients, researchers, and industry. Her work is shaped by both professional expertise and lived experience as a woman affected by a rare, X-linked genetic condition. Following the death of her father from adrenoleukodystrophy (ALD) and her own diagnosis as a genetic carrier, Taylor became deeply involved in rare disease advocacy, including successfully advancing legislation mandating newborn screening for ALD in the state of New Jersey. She is currently working with New Jersey legislators on a bill that would require health insurance companies to cover IVF with preimplantation genetic testing (PGT-M) for genetic carriers of severely disabling and life-threatening conditions. Taylor has collaborated with a wide range of for-profit and nonprofit organizations, serving as a consultant for companies across the U.S, Europe, and Latin America. She guides drug developers, genomics companies, reproductive health organizations, and IVF clinics offering PGT-M to connect more effectively and ethically with the patient communities they serve. Taylor is also the founder and consulting executive director of Remember The Girls, an international nonprofit organization dedicated to breaking the stigma surrounding females with X-linked genetic disorders. She is a sought-after speaker, published author, and recognized thought leader in rare disease and patient engagement, and is the author of Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.