Colorado Joins 23 States in Opening Rare Disease Advisory Council

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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Legislation to create a Rare Disease Advisory Council (RDAC) in Colorado has passed the state’s Senate and House and was recently signed into law by Gov. Jared Polis, making “the Centennial State” the 24th U.S. state to establish such a council and the 10th since the beginning of 2021.

RDACs are advisory bodies focused on better addressing the complex and unique needs of people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS).

“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,” Nick Kirchhof, a volunteer state ambassador in Colorado and a member of National Organization for Rare Disorders (NORD)’s Rare Action Network, said in a press release.

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“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,” said Heidi Ross, NORD’s vice president of policy and regulatory affairs.

The creation of RDACs in every U.S. state, as well as the optimization of existing ones, are among the goals of an initiative launched in 2020 by NORD called Project RDAC. The first RDAC was established in North Carolina in 2015.

Senate Bill 186 (SB 186), which cleared both state houses in May, establishes that the Colorado RDAC will comprise various rare disease stakeholders, including patients, caregivers, healthcare providers, and scientists. Their expertise will help educate the public, state agencies, medical professionals, and government officials in Colorado about rare diseases, and make policy recommendations to improve patient access to key healthcare services, such as diagnostic tools and affordable treatments.

“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,” Ross said.

“This RDAC will have a positive impact in making meaningful improvements to the everyday lives of families like mine,” said Kirchhof, whose daughter was diagnosed with an extremely rare disease called cystinosis, a lysosomal storage disorder. “I’m excited about the future and optimistic we can fight rare disease together with this council.”

Connecticut became the 23th state to establish a RDAC in May. More information on NORD’s Project RDAC can be found by using the supplied link.