Rachelle Dixon shares her story of growing up around "the family disease," eventually diagnosed as HSAN1E--a rare, hereditary, degenerative neurological condition that claimed the lives of her mother and two of her siblings. Rachelle is the President and Co-Founder of the HSAN1E Society, an advocate for rare diseases, and a frequent speaker on caregiving for individuals with rare diseases.


Links and Resources

The HSAN1E Society

NORD (National Organization of Rare Diseases)

Global Genes

Rare Advocacy Movement (RAM)

Rare Advocacy Movement (RAM)

HSAN1E Society on Facebook

hsan1esociety@gmail.com

Find Rachelle on Twitter @RachelleM_Dixon and on
LinkedIn.


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