Alana Newton

 I am intimately familiar with the experience of living with a rare disease, as both my son and I have Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. My desire to increase awareness and visibility of rare diseases led me to the Rare Disease Foundation.

I am honoured to be a board member of this innovative foundation as I am a passionate advocate. I am involved in volunteer, donor engagement and fundraising events. With a background in nursing, I am currently a clinical counselor working with adults with chronic health conditions. In my spare time I love swimming and hope to soon earn my motorcycle license.