RARE on the Road is a rare disease leadership series hosted by Global Genes and the EveryLife Foundation for Rare Diseases. These events provide critical education and insight to the rare disease community. This traveling leadership and educational series helps equip attendees with the knowledge on advocating for yourself, in your local and rare disease community, as well as how to advocate on a legislative level. The events aim to activate the rare disease community at a local level and empower patients and caregivers with knowledge and insight to better serve their rare community.
I truly thought this was one of the best conferences to prep me for advocacy work. It was concrete, concise and clear. – Kathy Green, Texas Children’s Hospital