Rare disease stakeholders connect at 2017 RARE Patient Advocacy Symposium

Rare disease patients, caregivers, representatives from advocacy organizations, and other rare disease stakeholders met on May 19, 2017 in Philadelphia for the 2017 RARE Patient Advocacy Symposium, a partnership of Global Genes and the Penn Medicine Orphan Disease Center. The symposium focused on rare disease research, drug development, and the patient advocacy organization’s role in this process.

Dr. Jennifer Levy represented C3 at the symposium, where she met with members of peer organizations to discuss the challenges faced by the rare disease field, and promising strategies to meet these challenges and accelerate cures.

Dr. Levy meets with Deanna Portero of the Fibrous Dysplasia Foundation to discuss patient registry platforms for rare diseases. — Dr. Levy (left) meets with Deanna Portero of the Fibrous Dysplasia Foundation to discuss patient registry platforms for rare diseases.

Only 5% of 7,000 rare diseases have FDA-approved treatments! RareLife Solutions is raising awareness through the #say5rarechallenge — Only 5% of 7,000 rare diseases have FDA-approved treatments! RareLife Solutions is raising awareness through the #say5rareChallenge

Rare disease stakeholders connect at 2017 RARE Patient Advocacy Symposium