About Taylor
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.
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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.
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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.
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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.
Why Partner with Taylor
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Deep lived and professional insight into rare disease, genetic risk, and reproductive decision-making, bringing a nuanced understanding of the emotional realities families face.
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Proven leadership in patient engagement, guiding major healthcare and genomics organizations to connect authentically with the communities they serve.
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Exceptional communication skills, from keynote presentations and workshops to social media campaigns and patient education initiatives.
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Trusted advocate and strategic partner, bridging science, ethics, and empathy to ensure patient voices inform organizational decisions.
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Extensive global network of rare disease advocates and stakeholders, enabling meaningful collaboration and insight across patient communities worldwide.
Recommendations
"Over the last two years, Taylor rapidly expanded her expertise in more than 40 rare diseases while managing social channels and developing strategic communication plans to improve engagement within those communities. She excelled at distilling complex scientific topics into accessible, engaging content for diverse audiences including patients, caregivers, and the stakeholders.
Taylor brought creativity, strategic thinking, and a deep understanding of the patient experience to designing content including long-form blog posts and social campaigns that resonated with target audiences. She leveraged social media platforms and tailored content to compellingly share updates on our progress from the patient perspective.
With strong communication skills, Taylor built rapport across team functions to align efforts including leaders in research, patient operations, marketing, sales and more. She took ownership of projects, provided patient-focused counsel, and kept stakeholders united.
I was consistently impressed by Taylor judgment in conveying nuanced scientific material across different formats and channels, and the quickness with which she executes. Her patient engagement skills and ability to authentically represent the product user voice were invaluable. I'm excited to see her develop her patient engagement and communications strategy skills moving forward."
"Over the last two years, Taylor rapidly expanded her expertise in more than 40 rare diseases while managing social channels and developing strategic communication plans to improve engagement within those communities. She excelled at distilling complex scientific topics into accessible, engaging content for diverse audiences including patients, caregivers, and the stakeholders.
Taylor brought creativity, strategic thinking, and a deep understanding of the patient experience to designing content including long-form blog posts and social campaigns that resonated with target audiences. She leveraged social media platforms and tailored content to compellingly share updates on our progress from the patient perspective.
With strong communication skills, Taylor built rapport across team functions to align efforts including leaders in research, patient operations, marketing, sales and more. She took ownership of projects, provided patient-focused counsel, and kept stakeholders united.
I was consistently impressed by Taylor judgment in conveying nuanced scientific material across different formats and channels, and the quickness with which she executes. Her patient engagement skills and ability to authentically represent the product user voice were invaluable. I'm excited to see her develop her patient engagement and communications strategy skills moving forward."
"It’s been my privilege and pleasure to interact and mentor Taylor Kane in the past few years in my capacity of co-founder and Board member of ALD Connect.
Taylor has shown astounding confidence and initiative in her life. As a teenager, she became an advocate for young female carriers of ALD, started a foundation, and wrote a fine book detailing her experience. She has built a following. The impetus for this progress came entirely from her. She has followed a call to get involved and make a difference.
Her personality lends itself naturally to this. Taylor is gregarious, energetic, spunky, optimistic. She is self-possessed and poised. She is a great public speaker. She has expanded to helping all young women carriers of X-linked conditions. She has become a Youth Ambassador for the EveryLife Foundation for Rare Diseases.
Taylor has shown amazing mastery of social media to build her profile, her community, and further her message of education and activism. She is a key opinion leader and major influencer.
Taylor has ambition and drive, and genuinely wants to expand her scope of work. She offers best practices to help other advocates tell their stories and start advocacy organizations. She will assist biotech companies to interpret and leverage patient community trends. I see a bright future for Taylor and very much hope to be a part of it!"
Taylor's Memoir
Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.
Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future.
In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud.
This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.