Advocacy is an extremely important part of supporting and helping the rare disease community. A big part of this is rare disease advisory councils (RDACs), which are governmental groups comprised of various members of the rare disease community, whether that’s patients, caregivers, experts, researchers, or healthcare providers. The purpose of these councils is to educate and advocate for the rare disease community while also providing more access for the patients themselves.
Now, there’s been a new update in regards to RDACs, and it’s very exciting! According to a press release from the National Organization for Rare Disorders (NORD), Colorado just became the 24th state to officially establish an RDAC!
Colorado’s governor, Jared Polis, has just signed Senate Bill 186. This marked the creation of an RDAC – the tenth new council since the beginning of 2021. Now, this diverse group of members from the rare disease community will be able to inform, educate, and push for policy that best supports them. They’ll work with the General Assembly, the public, and other agencies of the government to do what’s best for the community.
Hopefully other states follow Colorado’s lead and establish RDACs as well. With NORD’s Project RDAC, which aims to do just this, this goal is well in reach. Until then, we won’t stop working until rare disease patients across the entire country have a voice.