Taylor Kane’s 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. 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. 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. Taylor is the founder and consulting executive director of Remember The Girls, an international nonprofit organization which aims to break the stigma facing females with X-linked disorders. She also champions the needs of the rare disease community and works to foster communication and trust-building initiatives between biotechnology, pharmaceutical and genomic companies and their patient populations as a consultant (Taylor Kane Consulting, LLC). Taylor is a summa cum laude graduate of The George Washington University who primarily resides in New Jersey, but spends a great deal of time in the United Kingdom and the Czech Republic. 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.