From disease-specific to
systemic change
In our first strategic plan (2023–2025), the NV-RDAC concentrated on three specific disease categories: childhood cancers, factor deficiencies and inherited platelet disorders, and newborn screening conditions. This focused approach helped us build credibility, establish data infrastructure, and achieve meaningful legislative wins—including the passage of SB 348 (newborn screening expansion) and SB 189 (genetic counselor licensure).
Our 2026–2028 Strategic Plan addresses systemic issues that affect all rare disease patients in Nevada.
This approach allows us to create a broader impact and maintain our commitment to the populations we’ve championed from the start.
The NV-RDAC has
three strategic pillars.
These pillars serve as the guilding framework for all NV-RDAC activities, connecting our advocacy to measurable outcomes.
Awareness & Education
We are expanding beyond general awareness to targeted, impact-driven education across three stakeholder groups:
Healthcare Providers: Developing continuing medical education (CME) modules and training to improve rare disease recognition, genetic testing knowledge, and care coordination
Policymakers: Conducting legislative briefings and providing evidence-based summaries to inform policy and funding decisions
The Public: Creating campaigns that highlight systemic barriers—not just individual diseases—to build empathy and understanding
Care &
Support
We are expanding beyond general awareness to targeted, impact-driven education across three stakeholder groups:
Insurance coverage reform and documentation of denial patterns
Barriers to specialist access and telehealth utilization
Patient navigation resources and care coordination
Health equity and disparities affecting rural, underserved, and aging rare disease populations
Transitions from pediatric to adult care
Research &
Data
Building on our partnership with Cure 4 The Kids Foundation, we are strengthening Nevada’s rare disease data infrastructure:
Expanding the C4K Cancer and Rare Diseases Registry beyond initial conditions
Completing and analyzing our dual-perspective Needs Assessment (patient/family and provider surveys)
Using data to produce actionable policy recommendations and demonstrate measurable impact
Positioning Nevada as a national model for data-driven rare disease advocacy
The NV-RDAC also has
four legislative priorities.
Support for mandatory newborn screening expansion
Continuing to modernize Nevada's screening panel and ensuring every infant benefits from early detection
Improved Medicaid coverage and reimbursement
Addressing coverage of genetic testing, gene and cell therapies, and multidisciplinary care for rare disease patients
Legislative support for rare disease research and data collection
Expanding registry infrastructure and funding data-sharing mechanisms that strengthen research capacity
Protection of out-of-pocket caps for prescription drugs
Maintaining affordability protections for patients who rely on high-cost, life-sustaining therapies
Join Us!
Whether you’re a patient, caregiver, healthcare provider, researcher, policymaker, or advocate, your voice matters. The NV-RDAC exists to ensure that every perspective is heard and translated into action that improves lives.