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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.
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