TAHLEQUAH, Okla. — Cherokee Nation Principal Chief Chuck Hoskin Jr. and First Lady January Hoskin announced Friday the formation of a ‘rare disease’ committee in recognition of National Rare Disease Awareness Day.
Cherokee Nation leaders read and signed a proclamation declaring Feb. 29 as Rare Disease Awareness Day in the Cherokee Nation.
A rare disease is defined as one that affects fewer than 200,000 people and currently there are more than 7,000 known rare diseases in existence.
Within Oklahoma 10 percent of the population live with a rare disease. The Cherokee Nation remains committed to the health and happiness of all Cherokees and are devoted to bringing awareness to every tribal citizen’s struggle, especially when diagnosed with a rare disease.
“With this in mind Cherokee Nation is forming a committee which will be comprised of five to seven members including pediatricians, family medicine physicians or other primary care providers and some from other departments to review the needs of these unique patients,” Cherokee Nation Principal Chief Chuck Hoskin Jr. said. “The committee will look for resources to help our providers who are most likely to encounter these patients leading to earlier diagnosis, earlier treatment and improved outcomes of our tribal citizens and patients affected by rare diseases.”
The Cherokee Nation rare disease committee will also work to increase awareness and review and recommend needed policy within the tribe.
According to Dr. Roger Montgomery, medical director for Cherokee Nation Health Services, rare diseases pose a diagnostic challenge for medical providers everywhere, including the Cherokee Nation.
“These diseases often develop slowly and early symptoms are minimal and mimic symptoms caused by a variety of different diagnoses and also develop at different ages,” Dr. Montgomery said. “Many begin in infancy and their onset crosses the spectrum of age. Consequently, rare diseases pose a tremendous challenge for patients and providers often leading to misdiagnosis and delay in diagnosis. They are also a tremendous treatment challenge because of the limited numbers of specialists located in larger cities trained to treat patients affected by rare diseases.”