Listening First: What Nevada’s Rare Disease Needs Assessments Found
Nevada's first combined patient, provider, and clinical picture of rare disease care. What 508 families and 69 providers reported, and what comes next.
Category Archives for Blog Posts
Rare Disease Advisory Councils Across America: A 2026 National Snapshot
As of May 2026, 34 states have a Rare Disease Advisory Council, covering 78% of the country. See where the movement stands and how Nevada's council fits in.
Childhood Cancer Is a Family Diagnosis. Brigette Cole Makes Sure No One Faces It Alone.
NV-RDAC Member Profile: Brigette Cole July 2026 | Member-by-Member Series Brigette Cole was diagnosed just before her 28th birthday. It was almost 20 years ago in Reno, and a breast cancer diagnosis in a woman that…
What the Nevada Rare Disease Advisory Council Does
Key Takeaways The council’s job is written into law. SB315 (2019) charges the NV-RDAC with specific, required duties, not vague discussion, ranging from studying rare disease burden to filing an annual report with policy recommendations. …
What Is a Rare Disease Advisory Council?
Key Takeaways Rare diseases are common in aggregate. Each one affects fewer than 200,000 Americans, but more than 10,000 of them together touch over 30 million people, close to one in ten of us. An…
When Science Becomes Personal: A Father’s Mission to Fund What Others Won’t
NV-RDAC Member Profile: Dr. Craig Vincze, Ph.D. March 2026 | Member-by-Member Series In May 2021, a 22-year-old University of Nevada, Reno student named Max Vincze noticed a small lump on his neck while studying for…
Every 15 Minutes, a Baby Is Born With a Heart That Needs Help
NV-RDAC Member Profile: Dr. William N. Evans, MD February 2026 | Member-by-Member Series Nearly 40,000 babies are born with congenital heart disease in the United States every year. That’s one child every 15 minutes —…