Rare Disease Day: Advocate pushes for awareness of rare diseases

There are more than 7,000 rare diseases affecting an estimated 30 million Americans, according to the National Institute of Health.

News 12 Staff

Feb 29, 2024, 10:19 PM

Updated 42 days ago

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The last day of February is recognized as Rare Disease Day — a day for advocates to spread awareness and information on rare diseases.
There are more than 7,000 rare diseases affecting an estimated 30 million Americans, according to the National Institute of Health.
Many of those diseases have a direct link to a person’s genes.
"My dad, Jack, was diagnosed with a rare genetic condition called adrenoleukodystrophy," rare disease carrier and advocate Taylor Kane said.
Kane found out she was also a carrier of the rare disease at a young age, and says she has a 50% chance of passing it down to her children in the future.
She said knowing she's a carrier has empowered her, allowing her to plan for the future.
Carriers may not have any symptoms, or even know they have a genetic condition.
Kane started a non-profit organization called "Remember the Girls" to help other rare disease carriers by providing information.


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