Photo via NIH
Taylor Kane via Global Genes

Taylor Kane

Founder & President

Remember The Girls


Founder & President


Remember The Girls









What makes Taylor Kane a Global Shaker?

Taylor Kane is the founder and president of Remember the Girls, an international non-profit organization that unites, educates and empowers female carriers of x-linked genetic disorders–a group that is underrepresented and often overlooked by the medical profession.

Taylor’s activism began as a pre-teen, shortly after her father died from the rare x-linked recessive disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of the disease. Not only did she helped raise more than $250,000 for ALD research, but she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD, as therapy is significantly more effective if the disease is diagnosed very early.

In 2012, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in affecting positive change through advocacy, social media, and the legislative process.

She currently serves as a leader of the Young Adult Representatives of the EveryLife Foundation for Rare Diseases, educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments.

A recent summa cum laude graduate of The George Washington University, Taylor is an award-winning activist, an accomplished speaker, and author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.

Tags: patient advocacy, rare diseases

Last updated: February 29, 2020