Rare on the Road
May 2019 - Denver Colorado
Christy Jenson attended the "Rare on the Road" event sponsored by Global Genes. She learned how to tell her rare disease story to make the most impact. She connected with other rare disease patients and advocates.
PPALS
May 2019 - Souix Falls, South Dakota
Libby attended the Professional Patient Advocates in Life Sciences.
CARRA
April 2019 - Louisville, Kentucky
Sara and Libby attended the 2019 CARRA conference. They attended meetings with physicians and shared a patient perspective to help them understand our perspective. They attended alot of workgroups and helped with projects the Doctors are working on.
Rare Disease Day 2019
February 2019 - Bethesda, Maryland
Sara and Alex attended Rare Disease Day at the National Institute of Health. They met and worked with CoRDS Registry partners, Ben Forred and Austin Letcher and networked with other rare disease advocates and organizations.