Nevada Rare Disease Support: Your Voice Can Transform the Future of Care
Key Takeaways:
- The Nevada Rare Disease Advisory Council (NV-RDAC) has introduced detailed Patient & Family and Healthcare Provider Needs Assessments to collect vital information about rare disease care throughout Nevada
- Roughly 25–30 million Americans are affected by rare diseases, with many families enduring years of diagnostic uncertainty while feeling overlooked by healthcare providers
- Results from these assessments will directly inform Nevada’s upcoming Rare Disease State Plan, shaping policies and initiatives based on actual patient and provider experiences
- As one of 33 states with a Rare Disease Advisory Council, Nevada participates in a nationwide effort to amplify rare disease community voices in state policy
- Each assessment response contributes to identifying critical gaps in care coordination, accessibility, and support infrastructure for Nevada’s rare disease population
What Role Does the Nevada Rare Disease Advisory Council Play in Supporting Nevada Families?
Established through SB315 during Nevada’s 2019 legislative session, the Nevada Rare Disease Advisory Council (NV-RDAC) serves as an advisory body that amplifies the voices of Nevadans living with rare diseases, strengthening their representation in healthcare policy and state governance.
As one of 33 states nationwide with an established Rare Disease Advisory Council, Nevada joins a growing movement that began in North Carolina in 2015, when advocates and families initiated this transformative approach. This national initiative acknowledges that state governments hold a unique position to address rare disease challenges in ways that reflect their specific population characteristics and healthcare infrastructure.
NV-RDAC’s responsibilities encompass:
- Conducting statistical and qualitative analysis of rare diseases throughout Nevada
- Elevating awareness of the challenges posed by rare diseases
- Recognizing evidence-based approaches for rare disease prevention and management
- Assessing treatment delivery systems
The council additionally focuses on enhancing healthcare provider knowledge regarding rare disease symptoms and patient care, establishing a Nevada rare disease registry, and producing annual reports containing legislative and policy recommendations.
Through strategic engagement, the council has facilitated critical conversations with major stakeholders, including the National Organization for Rare Disorders (NORD), Medical Home Portal, Cure 4 The Kids Foundation, and Global Genes. A significant achievement has been the council’s productive partnership with the Nevada Department of Health and Human Services (DHHS) to optimize data collection procedures.
How Prevalent Are Rare Diseases in Nevada?
Though individual rare diseases affect under 200,000 people in the United States, more than 10,000 distinct rare diseases exist. Together, these conditions affect approximately 25–30 million Americans, with children representing roughly 50% of those impacted. These conditions create substantial obstacles in diagnosis, treatment, and quality of life for patients and their families.
Within Nevada, comprehensive statistics on rare disease prevalence remain limited. The scattered nature of healthcare systems and the inherent rarity of these conditions create data collection and reporting challenges. This information gap makes it difficult for state legislators and government officials to fully comprehend Nevada’s rare disease community needs.
This awareness deficit contributes to widespread and damaging barriers facing rare disease patients, including diagnostic delays, incorrect diagnoses, limited treatment availability, substantial out-of-pocket expenses, and restricted access to medical specialists. Many rare diseases remain undiagnosed or misdiagnosed for extended periods due to insufficient healthcare provider awareness and the uncommon nature of these conditions.
Yet beyond every rare disease statistic are parents seeking answers, providers working to help, and a system learning to listen.
Why Has NV-RDAC Chosen Listening as the Foundation for Change?
Listening creates the foundation for trust, safety, and healing. Yet silence remains among the most enduring obstacles in healthcare. This silence manifests when patients feel unsafe speaking up, when parents receive dismissive responses to legitimate questions, or when providers observe concerning patterns but remain quiet because previous feedback was ignored.
This is exactly why the Nevada Rare Disease Advisory Council has established listening as the cornerstone of transformation. Eighteen months ago, NV-RDAC introduced Nevada’s inaugural Patient & Family Needs Assessment to learn crucial information that can be used to improve healthcare in our state. The information collected has already begun influencing how the council approaches access, care coordination, and quality-of-life challenges for those with rare diseases in Nevada. However, additional voices remain essential to completing this comprehensive picture. Each new response provides crucial insight that drives meaningful progress.
Now, NV-RDAC has broadened this initiative with the introduction of the Healthcare Provider Needs Assessment, designed to capture frontline rare disease care perspectives. Combined, these assessments ensure comprehensive community representation.
The NV-RDAC surveys pose straightforward yet impactful questions, such as:
- What challenges do families encounter?
- Where do providers need additional support?
- How can Nevada develop a system where listening holds equal importance to laboratory results and diagnostic codes?
Results from both assessments will directly inform Nevada’s next Rare Disease State Plan, shaping policies, programs, and priorities that reflect lived experiences rather than data alone.
How Can You Contribute Your Voice to Nevada Rare Disease Support?
If you are a patient, family member, or caregiver managing a rare condition in Nevada, your experience matters. The Patient & Family Needs Assessment provides an opportunity to share your journey through diagnosis, treatment, and ongoing care.
If you are a healthcare provider working with patients who have rare or complex conditions, your insights are equally essential. The Healthcare Provider Needs Assessment enables you to share information about care delivery challenges, resource or training gaps, and support needs that would enhance patient care.
Your participation helps the council identify persistent challenges and areas of silence so we can develop strategies to replace them with collaboration, compassion, and meaningful action. We know that transformation begins not with policies, but with people speaking and others committed to listening.
How Has Patient Feedback Influenced Nevada Rare Disease Legislation?
Information collected through NV-RDAC’s Patient & Family Needs Assessment has already influenced legislative initiatives. Annette Logan-Parker, Board Chair at NV-RDAC and Founder of Cure 4 The Kids Foundation, utilized assessment insights to strengthen advocacy during Nevada’s 2025 legislative session. Patient experiences documented through the assessment helped legislators understand the tangible consequences of policy gaps in rare disease care.
We are thrilled that her advocacy produced two groundbreaking bills: Senate Bill 189, establishing genetic counselor licensing and recognizing genetic counseling as a reimbursable medical service, and Senate Bill 348, modernizing Nevada’s newborn screening program to guarantee comprehensive testing for life-threatening conditions for every baby.
These legislative achievements illustrate how patient voices directly influence Nevada policy. When families contribute their experiences through needs assessments, those stories establish the groundwork for systemic transformation. Discover more about Nevada’s 2025 rare disease legislative achievements.
NV-RDAC’s Achievements and Successes
Despite operating with limited resources, NV-RDAC has achieved substantial progress across several critical areas by emphasizing stakeholder engagement and collaborative solutions:
Establishing Nevada’s Rare Disease Data Infrastructure: NV-RDAC has launched foundational work to create a statewide rare disease registry, with specific attention to childhood cancer, sickle cell disease, and newborn screening conditions. These initiatives, in partnership with Cure 4 The Kids Foundation and DHHS, will equip Nevada with essential data to evaluate rare disease incidence, causes, and economic implications.
Developing Meaningful Stakeholder Engagement: The council has established stakeholder engagement as fundamental to addressing Nevada’s rare disease community needs. NV-RDAC has actively connected with diverse stakeholders, including rare disease patients, healthcare providers, advocacy organizations, lawmakers, and nonprofit groups. These engagements have provided critical understanding of challenges facing those living with rare diseases.
Increasing Public Awareness: NV-RDAC’s impactful “While You Wait” campaign and robust social media presence have substantially elevated public awareness regarding rare diseases, supported by live television appearances and print media coverage of council activities.
Championing Policy Changes: While NV-RDAC lacks direct bill draft request authority, the council has effectively partnered with legislators—from state senators to the governor—to introduce and enact important legislation. As noted above, NV-RDAC-informed advocacy has directly resulted in newborn screening program expansion, increased Medicaid reimbursements for pediatric cancer patients, improved access to pediatric specialized care, and additional achievements.
Enhancing Healthcare Partnerships: Through collaborations with DHHS and Cure 4 The Kids Foundation, the council has refined data collection processes, particularly for childhood cancer and sickle cell cases. The forthcoming development of a comprehensive childhood cancer and rare disease registry will further streamline these initiatives, ensuring Nevada’s rare disease data remains both accurate and efficiently maintained.
Every Voice Matters in Rare Disease Advocacy
Every patient deserves recognition. Every provider deserves support. And every policymaker deserves direct insight from those who live these experiences.
Nevada’s rare disease community leads this transformation, one story, one survey, one shared truth at a time. The dual needs assessments represent more than information gathering. They signify a commitment to building Nevada’s rare disease policies and programs on the authentic experiences of patients, families, and their healthcare providers.
With millions affected by rare diseases in Nevada, the collective impact on public health, healthcare systems, and affected individuals and families is considerable. Initiatives to increase awareness, enhance diagnosis and treatment, and advance rare disease research remain essential for addressing the needs of those living with these conditions.
In Nevada, the path forward starts with listening. Your participation in these assessments helps build a healthcare system where every voice receives recognition, where providers access necessary resources and support, and where families can find appropriate care and answers without enduring years of silent searching.
Join Us in Making a Difference: Participate in the Nevada Rare Disease Survey TODAY!
Patients, Families, and Caregivers:
Share your experience with rare disease care in Nevada: TAKE THE PATIENT & FAMILY NEEDS ASSESSMENT
Healthcare Providers:
Help us understand how to better support you in caring for rare disease patients: TAKE THE HEALTHCARE PROVIDER NEEDS ASSESSMENT
Your participation in this survey demonstrates your commitment to making a difference in the lives of individuals affected by rare diseases. By proceeding with either survey, you acknowledge and consent to your responses being included in this important project.
Join us in shaping a brighter future for those living with rare diseases in Nevada. Together, we can make a meaningful impact!