5 takeaways from Cherokee Nation Rare Disease Task Force report

Cherokee Nation Principal Chief Chuck Hoskin Jr signed an executive order in February 2024 establishing a Rare Disease Task Force to look into how the tribe and its healthcare system treat those with rare diseases and how it can improve going forward.

The panel released its final report on March 6th.

Here are five takeaways from that report:

This Will Be a Long-Term Effort

As a result of the task force’s work in 2024, the Cherokee Nation formed a permanent Rare Disease Advisory group.

Expanded Services

The report talked about the creation of a case manager to help people navigate the often complicated medical care that comes along with rare diseases. The registered nurse will act as a liaison between patients, providers and other parts of the healthcare system to make sure people understand every part of the care process.

Bringing Caregivers Together

The tribe held a summit in 2024 to bring caregivers together to discuss the treatment of rare diseases and hear from experts in the field. That’ll continue in 2025 and feature changes after organizers got feedback from participants in the inaugural conference.

Breaking Barriers

Healthcare is expensive and cost is a big worry for families. The report encouraged the Cherokee Nation to look into a fund or financial assistance program to help those suffering from rare diseases.

Keep Growing

The tribe expanded or created new services to help those suffering from rare diseases, including specialty clinics for eye issues and a cleft palate clinic. The report called on tribes to keep that growth going in 2025 and into the future. The report also recommended the creation of support groups to bring people together who are going through similar struggles.