Schedule

2025 Cherokee Nation
Rare Disease Summit

Thursday, June 12
8:00 a.m. – 9:00 a.m. Central	Registration & Breakfast Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC
9:00 a.m. – 9:15 a.m. Central	Welcome and Opening Remarks Beth Harp, DO, MHA – Chief Medical Officer Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC
9:15 a.m. – 10:15 a.m. Central	MPS Hurler Syndrome (Cherokee Nation Citizen) – The Rare Disease Journey Alex Price - Rare Disease Caregiver & Advocate Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC
10:20 a.m. - 11:20 a.m. Central	Opening Remarks Canaan Duncan – Deputy Secretary of State Chuck Hoskin Jr. – Principal Chief Bryan Warner – Deputy Principal Chief January Hoskin – First Lady Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC
11:20 a.m. – 12:20 p.m. Central	Lunch Cherokee Nation Outpatient Health Center (CNOHC) Conference Room ABC Resource Fair Cherokee Nation Outpatient Health Center (CNOHC) Community Room Hallways
12:30 p.m. – 1:30 p.m. Central	Breakout Session Newborn & Rare Disease Screening Program Jennifer Baysinger, Oklahoma State Department of Health Cherokee Nation Outpatient Health Center (CNOHC) Conference Room ABC
12:30 p.m. – 1:30 p.m. Central	Breakout Session Cystic Fibrosis and Clinical Research Dr. Condren - University of Oklahoma Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 1
12:30 p.m. – 1:30 p.m. Central	Breakout Session Spina Bifida Speaker Pending Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 3
1:30 p.m. – 1:45 p.m. Central	Break
1:45 p.m. – 2:45 p.m. Central	Breakout Session Rare Disease Advocacy Speaker Pending Cherokee Nation Outpatient Health Center (CNOHC) Conference Room ABC
1:45 p.m. – 2:45 p.m. Central	Breakout Session Ehlers Danlos Syndrome Speaker Pending Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 1
2:45 p.m. – 3:00 p.m. Central	Break
3:00 p.m. – 4:00 p.m. Central	Breakout Session CKLK5 Deficiency (Cherokee Nation Citizen) – Rare Disease Diagnosis and Journey Rare Disease Caregiver & Adocate Cherokee Nation Outpatient Health Center (CNOHC) Conference Room ABC
3:00 p.m. – 4:00 p.m. Central	Breakout Session Newborn & Rare Disease Screening Program Jennifer Baysinger, Oklahoma State Department of Health Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 1
3:00 p.m. – 4:00 p.m. Central	Breakout Session Genetics/Genetic Testing Speaker Pending Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 3
4:00 p.m. – 4:30 p.m. Central	Break
4:30 p.m. – 5:00 p.m. Central	Closing Plenary Speaker Q&A Panel Moderated by Beth Harp, DO (Chief Medical Officer) Dr. Kaushik (Virtual) OU Speaker Jennifer Baysinger Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC