Join us in making a difference.
Participate in the Nevada Rare Disease Survey
Voices like yours can change Nevada law
Responses to the NV-RDAC's first Patient & Family Needs Assessment helped shape two 2025 laws: one establishing genetic counselor licensing and one modernizing newborn screening for every baby born in Nevada. When you share your experience, you add to a record that legislators listen to and act on.
Nevada can't fix what it can't see
Your lived experience is the missing data we need. Nevada still lacks a clear picture of how rare disease affects its residents. Conditions are uncommon, diagnoses are scattered, and the numbers alone leave critical gaps. Your response fills in what statistics miss: where care breaks down, where families wait too long, and where providers need more support.
You're helping write Nevada's next rare disease state plan
Results from both assessments feed directly into Nevada's next Rare Disease State Plan, the roadmap that guides policies, programs, and priorities across the state. The more people who respond, the more those plans reflect real life instead of guesswork. A few minutes today helps decide what care looks like for years to come.
The questionnaire takes about 20–30 minutes to complete.
Your participation matters.
Whether you’re a provider, a patient, or a caregiver, completing this survey plays a crucial role in improving support for individuals living with rare diseases in Nevada.
Your input will directly contribute to enhancing the quality of care and guiding state agencies on research, diagnosis, treatment, and educational initiatives related to rare diseases. Your participation will help us gain insights into demographics, disease progression, treatment availability, quality of care, and other essential resources that can make a difference in our state today.
Eligibility and Confidentiality
Participants must be 18 years of age or older and either reside in Nevada or receive medical care in the state. All information provided is anonymous and confidential. Your responses will only be reported in aggregate form to inform policies and services related to rare diseases in Nevada. Participation is voluntary, and there is no financial compensation involved.
Your participation in this survey demonstrates your commitment to making a difference in the lives of individuals affected by rare diseases. By proceeding with the 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!