Latest news with #RareDiseaseSummit
Yahoo
a day ago
- Health
- Yahoo
Cherokee Nation hosts second annual Rare Disease Summit
TAHLEQUAH, Okla. — Rare diseases affect an estimated 1 in 10 Americans and consist of over 7,000 known conditions. These staggering figures prompted the Cherokee Nation to host its second Rare Disease Summit this week. The summit brought together health care professionals, medical specialists, and the community to better address the unique challenges facing tribal citizens with rare medical conditions. 'Cherokee Nation has always been committed to meeting the health care needs of our citizens, no matter how complex or challenging those needs may be.' Principal Chief Chuck Hoskin Jr. According to the National Institute of Health, any disease affecting fewer than 200,000 people in the United States is rare, and more than 90 percent lack FDA-approved treatments. 'Our second annual Rare Disease Summit demonstrates our unwavering dedication to ensuring that no Cherokee citizen faces a rare disease diagnosis alone,' Hoskin said. 'By bringing together leading medical experts, patients, families, and advocates, we're building a stronger support network and advancing care options that can make a real difference in people's lives.' He said that this summit represents the Cherokee values of working together and leaving no one behind. This year's summit featured expert speakers across multiple medical specialties, including neurology, rheumatology, optometry, infectious disease, and pediatrics. Attendees participated in an interactive question-and-answer panel and explored a resource fair designed to provide comprehensive information and support. Summit attendees also had the opportunity to take part in various breakout sessions throughout the day that covered the following topics: the Newborn and Rare Disease Screening Program; building partnerships to optimize Cystic Fibrosis care in children and adults; genetic testing for epilepsies; mental health in the perinatal period; rare genetic variants and their role in diabetes and vascular diseases; Pediatric Neurovascular Disease; Ehlers Danlos Syndrome; and Spina Bifida and Chiari. Cherokee Nation's health care system, the largest tribally operated health system in Indian Country, is committed to finding solutions and increasing resources for people with rare disease conditions by raising awareness, advocating for policy change, and building a growing support network. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
17-03-2025
- Health
- Yahoo
Cherokee Nation to assist individuals with rare diseases
TAHLEQUAH, Okla. — With rare diseases affecting 1 in 10 Americans and over 7,000 known conditions, the Cherokee Nation is taking a significant step toward raising awareness and addressing these complex medical challenges. The Cherokee Nation Health Services Rare Disease Task Force recently released its nine-page report outlining progress made over the past year and recommendations the tribe can take in the future to help address the unique challenges faced by patients with rare diseases both on and off the Cherokee Nation Reservation. Established by Principal Chief Chuck Hoskin Jr., the task force has spent the past year thoroughly examining treatment approaches and developing strategies to enhance care for patients and families affected by rare diseases. 'The work of the Rare Disease Task Force represents our unwavering commitment to provide the most comprehensive care possible for the patients in our health system, including those facing the unique challenges of rare diseases,' Hoskin said. 'The conclusions of our task force not only highlight the significant progress we've made in the past year but also charts a clear path forward to ensure no one is left behind in our health care system.' The Rare Disease Task Force report provided several recommendations and outlined some key accomplishments: The establishment of a committee to evaluate specialty lab availability, including genetic testing for rare disease diagnosis, while adhering to evidence-based medicine protocols. The planning phase for a dedicated research department and the development of system-wide cancer care coordinator positions. Continue to host the tribe's Rare Disease Summit Establish a permanent rare disease advisory group Expand behavioral health and specialty services Develop financial support mechanisms for patients with rare diseases Strengthen data sovereignty and research partnerships to ensure patient information is protected and respected Continue the growth of rare disease case management 'Our hope is that, by implementing the Rare Disease Task Force's recommendations and continually looking for ways to do more, that Cherokee Nation citizens like Meadow will find more comfort and care and recognize that they are not on their journey alone.' Cherokee Nation Principal Chief Chuck Hoskin Jr. Since the task force began its work in 2024, Cherokee Nation Health Services has assigned a Registered Nurse as a case manager for rare disease patients. The case manager works closely with the primary care team and specialists to close gaps in care and assist patients with access to critical resources, helping facilitate referrals, durable medical equipment needs, and other necessary services. The Rare Disease Task Force announced the tribe's plan to host its second Rare Disease Summit on June 12. The summit will address the unique challenges facing tribal citizens with rare medical conditions and bring specialty physicians, healthcare professionals, and community members together to discuss key topics and rare diseases impacting the reservation. Registration is required to attend the free summit, and you can complete it by clicking here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
