Colorado Rare is a 501(c)3 nonprofit organization.
EIN #82-1320966
ColoradoRare@gmail.com
Your donation supports the important work of Colorado Rare. In 2020, we will be hosting Rare Disease Awareness events at the State Capitol and at Children's Hospital Colorado. We also outreach to other organizations that share our vision and work collaboratively to meet the needs of our Colorado Rare Disease community.
Colorado Rare dedicates its work to all of our loved ones who live with a rare disease and the family members and professionals that work together to seek answers, and provide care and support.
We are especially saddened by the recent loss of Truett, a young boy who was a fierce warrior with an undiagnosed rare disease. His spirit and determination will continue to inspire our work so that we can create a Colorado that better supports those who live with rare diseases.
Donations in honor of TRUETT and his family can be made through the DONATE button. You can leave a message for Truett's family here:
Colorado Rare's mission is to be a united voice in Colorado to support and represent the needs and challenges of individuals living with rare diseases and their families.
Colorado Rare brings together advocates, providers, and legislators to seek a collaborative vision for meeting the unique needs of the rare disease community in Colorado.
Colorado Rare will explore and respond to opportunities that bring awareness to rare diseases and create collaborative relationships that support Colorado rare disease advocates and families.
Colorado Rare was founded by individuals and family members living with rare disease.
Colorado Rare connects rare disease advocate leaders for support and resource sharing to empower their individual work in the community and for their specific rare disease.
Colorado Rare advocates for a pediatric Rare Disease Center of Excellence program at a Colorado children’s hospital.
Each year, Rare Disease Day brings attention to the needs of rare families. Colorado Rare hosts events to increase awareness of rare diseases.
