Guest Opinion<\/p>\n
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 \u2014 the recognition of shared hardships and the collective goal of working together for the common good.<\/p>\n
Cooperation is a part of who we are. Whether it\u2019s investment in health care, housing, broadband infrastructure or elder care, cooperation and well-being for one another is the starting point.<\/p>\n
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.<\/p>\n
Rare diseases affect 1 in 10 Americans, and of more than 7,000 known rare conditions, 90% lack FDA-approved treatments, according to the\u00a0U.S. Food and Drug Administration<\/a>.<\/p>\n 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.<\/p>\n It is incumbent on our tribe to recognize this shortcoming, acknowledge the realities of rare diseases and take action to break down isolating barriers.<\/p>\n Cherokee Nation recently recognized\u00a0Rare Disease Month through a proclamation I signed<\/a>. In addition to the important recognition, the proclamation announced Cherokee Nation\u2019s third annual Rare Disease Summit on Oct. 7 and permanently established the Rare Disease Advisory Group to advise the Office of Principal Chief on rare disease policy, care and advocacy.<\/p>\n 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.<\/p>\n These recent actions continue the commitment that led to our Rare Disease Care Coordination Program in\u00a0Cherokee Nation Health Services<\/a>, 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.<\/p>\n Supporting that work is another resource that sets Cherokee Nation apart: the tribe\u2019s biobank, operated through CNHS. To our knowledge, CNHS and the Alaska Native Tribal Health Consortium operate the nation\u2019s 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.<\/p>\n We are also expanding commitment to early identification and intervention through pediatric initiatives. A\u00a0Neonatal Intensive Care Unit<\/a>\u00a0will 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.<\/p>\n All of these efforts spring from rare disease advocates here in the Cherokee Nation, including those who served on the\u00a0Rare Disease Task Force since 2024<\/a>. Their efforts make our progress in rare diseases possible.<\/p>\n