Ann Jensen
NV-RDAC Member Ann serves as Administrator at the Division of Nevada Medicaid. Prior to this role, Ann served as Innovation Officer at Nevada Medicaid, where she oversaw the implementation of value-based care strategy with managed…
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Lessons From Nevada’s Rare Disease Needs Assessment
Nevada's first combined patient, provider, and clinical picture of rare disease care. What 508 families and 69 providers reported, and what comes next.
The System Didn’t Believe Her: Madison Bowe on Living with Stiff Person Syndrome in Nevada
NV-RDAC Member Profile: Madison Bowe September 2026 | Member-by-Member Series Madison Bowe was training to save lives when her own body gave her a warning. She was in an Advanced Emergency Medical Technician class at her…
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.
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…
Mallory Carvalho
NV-RDAC MemberMSW Mallory Carvalho is a social worker, advocate, and childhood cancer survivor whose professional and personal experiences uniquely position her to serve the rare disease community in Nevada. As a former pediatric oncology patient…