CBSA Joins Patient Community to Raise Awareness about Rare Diseases

This week, CBSA joined the Colorado Rare Action Network for Colorado Rare Disease Day. The virtual event was an opportunity to educate state legislators and the public about the challenges rare disease patients and their families face and explore how the formation of a Rare Disease Advisory Council (RDAC) in Colorado could address the needs of those living with a rare disease.

Legislation to form a RDAC has passed in 16 states across the country since 2015. While the composition and setup of each council varies from state to state, the goal is to  provide a way for stakeholders to make formal recommendations to state leaders and policymakers about the most important issues facing the rare disease community, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.

The National Organization for Rare Disorders (NORD) launched Project RDAC in November 2020 to optimize existing RDACs and help more states enact this legislation. Learn more about their effort here.

CBSA Vice President Emily Roberts spoke to attendees about exciting developments in genomic medicine happening right here in Colorado and the promise these treatments hold for rare, genetic diseases. She also talked about opportunities for meaningful collaboration between industry and the rare disease patient and caregiver community.

International Rare Disease Day takes place all over the world on the last day of February each year. The main objective is to raise awareness about rare diseases and their impact on patients’ lives. Learn more about how to get involved.

Categories: CBSA News