Join Us in Making a Difference: Participate in the Nevada Rare Disease Survey TODAY!
The Nevada Rare Disease Advisory Council (RDAC) is reaching out to the community to participate in an important survey aimed at understanding the prevalence and impact of rare diseases in our state. 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.
A rare disease, also known as an orphan disease, is a medical condition that affects a small number of people compared to the general population. In the United States, a disease is typically considered rare if it affects fewer than 200,000 individuals. However, definitions may vary by country. These diseases often present unique challenges due to their low prevalence, including difficulties in diagnosis, limited treatment options, and inadequate research funding. Rare diseases can range from genetic disorders to infectious diseases to certain types of cancers.
Your Participation Matters
By completing this survey, you play a crucial role in improving support for individuals living with rare diseases in Nevada. We urge Nevadans affected by rare diseases, including caregivers and family members, to participate in the survey to help us gain insights into demographics, disease progression, treatment availability, quality of care, and other essential resources.
Survey Details
The survey aims to understand the experiences of individuals, caregivers, and family members affected by rare diseases, especially regarding accessing care and navigating the healthcare system in Nevada. The questionnaire, accessible online, may take approximately 20-30 minutes to complete.
Your Participation Matters
By completing this survey, you play a crucial role in improving support for individuals living with rare diseases in Nevada. We urge Nevadans affected by rare diseases, including caregivers and family members, to participate in the survey to help us gain insights into demographics, disease progression, treatment availability, quality of care, and other essential resources.
Survey Details
The survey aims to understand the experiences of individuals, caregivers, and family members affected by rare diseases, especially regarding accessing care and navigating the healthcare system in Nevada. The questionnaire, accessible online, may take approximately 20-30 minutes to complete.
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 not be linked to your identity, and survey findings 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 the 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!