Areas of Focus

AREAS OF FOCUS

Strategic Focus: 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).

Now, informed by comprehensive data from our Statewide Needs Assessment and input from council members, we are evolving our approach. The data revealed a clear pattern: the systemic barriers facing Nevada’s rare disease community—insurance coverage challenges, diagnostic delays, limited specialist access, care coordination gaps, and insufficient provider knowledge—transcend any single diagnosis.

Our 2026-2028 Strategic Plan shifts from disease-specific advocacy to addressing systemic issues that affect all rare disease patients in Nevada. This approach allows us to create broader impact while maintaining our commitment to the populations we’ve championed from the start.

Our Three Strategic Pillars

These pillars serve as the guiding framework for all NV-RDAC activities, connecting our advocacy to measurable outcomes.

Awareness and 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 and Support

We are working toward a Comprehensive Rare Disease Plan for Nevada that addresses:

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 and 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

NV-RDAC's Legislative Priorities

Our legislative advocacy is now focused on four critical areas:

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 are 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.

We welcome the public to participate in the rare disease advisory meetings. Our meetings are open to the public and take place the first Friday of every month at 9:30am PST.