TAHLEQUAH, Okla. — Cherokee Nation Principal Chief Chuck Hoskin Jr. signed a proclamation Friday, Feb. 27, at the Cherokee Nation Outpatient Health Center recognizing Rare Disease Month and announcing that the tribe will host its third annual Rare Disease Summit on Oct. 7.
The proclamation signing highlights the tribe’s ongoing commitment to raising awareness of rare diseases and strengthening resources for the more than 1 in 10 Americans living with one of more than 7,000 known rare conditions, more than 90 percent of which lack FDA-approved treatments.
Chief Hoskin also announced the establishment of a permanent Rare Disease Advisory Group to advise the Principal Chief on rare disease policy, care, and advocacy. The advisory group follows the completion of tasks assigned to a previously assembled Executive Order Task Force, marking a significant step toward sustained, long-term leadership on rare disease issues within Cherokee Nation.
“Signing this proclamation is a reminder that Cherokee Nation sees every citizen, including those navigating some of the most difficult and isolating health journeys imaginable,” said Principal Chief Hoskin. “The creation of a permanent Rare Disease Advisory Group reflects our commitment to making this work last. We are not just responding to a moment, we are building an infrastructure that will serve our citizens for generations. Our third annual Rare Disease Summit is another opportunity for us to show up for patients, families, providers and advocates in a meaningful way, and I am proud that Cherokee Nation continues to lead this important work in Indian Country.”
At the center of Cherokee Nation’s rare disease efforts is the Rare Disease Care Coordination Program within Cherokee Nation Health Services, which currently manages a caseload of more than 515 patients. The program provides comprehensive, multidisciplinary case management for patients with rare disease diagnoses and coordinates care across multiple health systems and specialty providers. Services include assistance with specialty and out-of-state referrals when medically necessary, prior authorization and payer approval facilitation, and direct collaboration with hospital systems to streamline admissions and prevent avoidable emergency room visits. The program also supports patients in establishing primary care providers to ensure long-term continuity of care.
Cherokee Nation is also expanding its commitment to early identification and intervention through several pediatric initiatives. The Rare Disease Case Manager will partner with the Pediatric Department to implement and strengthen newborn screening initiatives, supporting early diagnosis and rapid care coordination. A Neonatal Intensive Care Unit will open in the new Cherokee Nation hospital this summer, enhancing the tribe’s ability to care for medically complex newborns closer to home. A new Nuclear Medicine Lab will also expand advanced diagnostic capabilities, improving early detection, imaging precision, and disease monitoring.
Now in its third year, the Rare Disease Summit has grown into a cornerstone event for patients, families, advocates, and health care professionals across northeast Oklahoma. The summit offers attendees the opportunity to connect with specialists, access a resource fair, participate in educational breakout sessions, and find community with others who understand the challenges of rare disease diagnoses. For providers and health care professionals, the summit serves as a platform for clinical education and the advancement of care strategies for complex conditions.
“What we have built with this summit is a reflection of who we are as Cherokee people,” said Deputy Chief Bryan Warner. “We do not leave anyone behind, and we do not let our citizens face difficult circumstances without the support of their Nation. Seeing patients, families and medical professionals come together each year to learn from one another and lift each other up is something I am deeply proud of.”
First Lady January Hoskin, who has been a driving force behind the summit since its inception, expressed her enthusiasm for the continued growth of the event.
“Every year this summit grows, and every year I am moved by the strength of the families who walk through those doors looking for answers, support and hope,” said First Lady Hoskin. “Cherokee Nation is committed to being a place where no rare disease patient feels alone. October 7 cannot come soon enough, and I look forward to welcoming even more patients, advocates and experts to our third annual summit.”
Additional details about the third annual Rare Disease Summit, including speakers, breakout session topics, and registration information, will be announced in the coming months.