The Cherokee identity, in all its rich complexity, grows from common values and a shared cultural heritage. An important aspect of Cherokee culture is encapsulated in the spirit of Gadugi — the recognition of shared hardships and the collective goal of working together for the common good.

Cooperation is a part of who we are. Whether it’s investment in health care, housing, broadband infrastructure or elder care, cooperation and well-being for one another is the starting point.

Rare diseases present a challenge. By definition, rare diseases affect a small percentage of the population and lack concrete treatment options, which health care systems rely upon.

Rare diseases affect 1 in 10 Americans, and of more than 7,000 known rare conditions, 90% lack FDA-approved treatments, according to the U.S. Food and Drug Administration.

Frustratingly, the nature of a rare disease is that it singles out tribal citizens. It isolates patients who may not find the support that other, more common conditions foster. Rare diseases create exceptions to the very processes designed to help patients.

It is incumbent on our tribe to recognize this shortcoming, acknowledge the realities of rare diseases and take action to break down isolating barriers.

Cherokee Nation recently recognized Rare Disease Month through a proclamation I signed. In addition to the important recognition, the proclamation announced Cherokee Nation’s third annual Rare Disease Summit on October 7 and permanently established the Rare Disease Advisory Group to advise the Office of Principal Chief on rare disease policy, care and advocacy.

Our third annual Rare Disease Summit is another opportunity for us to show up for patients, families, providers and advocates in a meaningful way. It also reaches beyond our borders, providing a platform for rare disease among other tribes throughout Indian Country.

These recent actions continue the commitment that led to our Rare Disease Care Coordination Program in Cherokee Nation Health Services, which manages a caseload of more than 515 patients. The program provides comprehensive, multidisciplinary case management for patients with rare disease diagnoses across multiple health systems and specialty providers.

Supporting that work is another resource that sets Cherokee Nation apart: the tribe’s biobank, operated through CNHS. To our knowledge, CNHS and the Alaska Native Tribal Health Consortium operate the nation’s only fully Indigenous-owned and Indigenous-led biobanks. Biobanks have multiple applications, including supporting rare disease research by collecting and storing biological samples from affected individuals. Because rare diseases affect relatively small patient populations, centralized sample storage allows researchers to access materials that would otherwise be difficult to obtain. These samples help scientists study the causes of disease and better understand how those diseases develop.

Biobanks also promote collaboration and data sharing among researchers, helping accelerate the development of diagnostics and treatments. The CNHS biobank is currently participating in research projects focused on liver cancer, hepatitis C and community-acquired pneumonia, and its potential role in advancing rare disease research is significant.

We are also expanding commitment to early identification and intervention through pediatric initiatives. A Neonatal Intensive Care Unit will open in the new Cherokee Nation hospital this summer, and a new Nuclear Medicine Lab will expand advanced diagnostic capabilities, improving early detection, imaging precision and disease monitoring.

All of these efforts spring from rare disease advocates here in the Cherokee Nation, including those who served on the Rare Disease Task Force since 2024. Their efforts make our progress in rare diseases possible.

I also want to thank First Lady January Hoskin, who has been a driving force behind our annual Rare Disease Summit. Before Deputy Chief Warner and I took office, while I served as our Secretary of State, my wife inspired me with her own challenging journey dealing with a rare disease. She inspired me further in joining her efforts to raise awareness. As First Lady, her work means fewer people have to live in the shadows on this issue and suffer alone.

The individuals behind the Rare Disease Task Force and Rare Disease Summit are the workhorses that make strategic, smart investment possible. Their leadership is deeply appreciated, not just by me but also by the patients and families of patients who face rare diseases. They are the outstretched arms inviting Cherokees isolated by rare disease into our full embrace.

Rare diseases represent an ongoing challenge that we will meet as a tribe. We recognize challenges and setbacks even to the least of us as an opportunity to strengthen our tribe as a whole. It is central to who we are and the spirit that will carry our nation for generations to come.

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