Vermont Rare is a non-profit organization established to support patients, families and caregivers affected by rare disease. Our goal is to be a voice for the rare disease community in Vermont and beyond; to educate and raise awareness about the impacts of living with rare disease on patients, families, caregivers and communities; and to provide financial assistance and support to those affected by rare disease.

Shane is 11 and lives with a rare disease. CFC, which is in the RASopathies family affects cell development and growth along with many systems of the body. Like many other rare diseases, there is no cure, no treatment. Yet this does not define who Shane is. He is funny, smart in his own way, resilient, outgoing can takes every day as it comes.