Rachelle Dixon grew up in the shadow of rare disease. She was born into a family affected by HSAN1E, a rare fatal disease, and she lived her whole life with the possibility that she may have the disease. During Rachelle’s late 20’s she lost her Mother to this devastating disease. Years later, she went on to be the caregiver for her older brother, and sister. In 2015, Rachelle lost her sister to HSAN1E, and eleven months later she lost her brother to the disease as well. Through a DNA test, Rachelle eventually learned that she was not affected by HSAN1E. Armed with the information that she was not affected, and driven by her love of family, Rachelle, along with other members of her family formed the HSAN1E Society. HSAN1E Society is a nonprofit organization, that’s mission is to raise awareness for HSAN1E and help provide support for other families that are affected by this horrible disease. Since 2015 Rachelle has dedicated her time to spreading awareness of HSAN1E, and acting as an advocate for HSAN1E in the rare disease community. She believes knowledge brings hope, even when faced with a deadly diagnosis like HSAN1E. Rachelle is passionate about the work she does for families with HSAN1E, and for the rare disease community.
I’m a Patient Leader