Colorado Rare Disease Coalition
Improving outcomes through collaboration, education, and connection.
Our Mission
Our mission is to build and empower a connected rare disease community across Colorado by providing education, support, and meaningful pathways for engagement. Through advocacy, collaborative partnerships, and innovative policy work, we strive to end the diagnostic odyssey, expand access to care, and drive the development of life-changing treatments for families throughout the region and beyond.
What We Do
The Colorado Rare Disease Coalition works to encourage collaboration across stakeholders, helps to elevate the rare disease and medically complex community's voice, and strives to improve the lives of those living with rare disease.
The CRDC connects with stakeholders to establish taskforce focus groups with the goal of creating comprehensive solutions to the unique problems experienced by rare disease community members.
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CRDC's Adult Transition Taskforce focuses on improving the process and care when our loved ones transition from pediatric care into adulthood.
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The Housing Taskforce works to improve homeownership, housing options, and resources for families impacted by rare disease.
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Our Policy Taskforce increases advocacy opportunities, creates policy recommendations, and elevates the rare disease community voice in decisions.
Upcoming Events
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Colorado Rare Disease Research Day
Colorado Rare Disease Fair
When: October 12, 2026 October 13, 2026 9am - 5pm MST
Where: Children's Hospital Conference Center 13123 E. 16th Ave. Aurora, CO 80045
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Chronic and Rare Disease Awareness Day at the State Capitol
When: TBD
Where: Colorado State Capitol 200 E. Colfax Denver, CO 80203
Registration opening soon
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Adult Transitions Taskforce
When: 12pm Third Friday Every Month
Where: Online
To be added to meetings email: ACTnow4patients@gmail.com
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Housing Taskforce
When: 3pm Meets Quarterly
Where: Online
To be added to meetings email: ACTnow4patients@gmail.com
Policy Priorities
Federal and State Policy
- Whole Genome Sequencing Access
- Pharmacy Benefit Manager Reform
- 340B Reform
- Medicaid Funding
- Nationalizing HCBS Access
- Equitable Healthcare
- Prescription Drug Affordability
Contact Us
Telephone: 719-357-2334
