Scroll
To Top

Jun. 9, 2022

TOPIC: Press Releases, Advocacy, RDACs

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Posted by Rohan Narayanan

New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases

June 9, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council (RDAC), making Colorado the 10th state to establish an RDAC since the start of 2021.

SB 186 establishes the Colorado RDAC which will be made up of a diverse group of rare disease stakeholders including patients, caregivers, health care providers, and researchers. Their expertise will be an asset to the entire state of Colorado to educate the public, state agencies, and the General Assembly about rare diseases and make policy recommendations to improve patient access to critical health care services.

“Thank you to the bill sponsors, stakeholders, and everyone in the rare disease community for helping to establish a Rare Disease Advisory Council here in Colorado. This RDAC will have a positive impact in making meaningful improvements to the everyday lives of families like mine.  I’m excited about the future and optimistic we can fight rare disease together with this council,” said Nick Kirchhof, the National Organization for Rare Disorders (NORD) Colorado Rare Action Network Volunteer State Ambassador.

Any condition that affects fewer than 200,000 Americans is considered rare. There are more than 7,000 known rare diseases, affecting 25-30 million Americans across a broad spectrum of medical conditions.  NORD established Project RDAC in 2020 to increase the number of RDACs across the country and help optimize existing RDACs to help better meet the complex needs of the rare disease community. Including Colorado, a total of 24 states have signed legislation into law creating a Rare Disease Advisory Council.

“NORD is proud to work alongside patient advocates, families, and lawmakers in Colorado to elevate the voices of the local rare community and ensure they have access to the support and services they need to thrive. People with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of affordable access to therapies – and an RDAC can help address those needs,” said Heidi Ross, NORD Vice President, Policy and Regulatory Affairs.

For more information on NORD’s Project RDAC, visit https://rarediseases.org/projectrdac/. To learn more about NORD’s policy work, visit: http://bit.ly/Policy-Issues.

About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.