On September 24-25, 2015, the Rare Patient Advocacy Summit presented by Global Genes™, took place in Huntington Beach, California.
Global Genes™ is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. There mission is to eliminate the challenges of rare disease by building awareness, educating the globall community and providing critical connections and resources that equip advocates to become activists for their disease.
The Summit offered practical advice, case studies, and networking opportunities. The goal of the Summit was to have patient advocates walk away with a better understanding of the challenges they will face and ways they can be the most effective in advocating for their diseases/disorders.
CARES Foundation Executive Director, Dina Matos, was one of the Summit’s presenters. She spoke about the need for comprehensive care centers in treating rare diseases and how CARES developed their centers of excellence where patients can receive coordinated care among a group of specialists allowing for easier access and connections to other patients and families with the same disease/disorder.