Background Information
The NW Rare Disease Coalition created this 15-minute survey to learn more about the needs of individuals, families and loved ones affected by rare diseases in Washington State. As a person with a rare disease or caregiver of someone affected by a rare disease, please know we are grateful for you taking the time to respond. Responses to this survey will help us prioritize our efforts to improve the quality of life for Washington's rare diease community.

As a reminder, no identifying information will be gathered for this survey. If you need to contact us, please visit
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Clicking on the “Agree” button indicates that: You have read the above information; you voluntarily agree to participate; you are 18 years of age or older; and you reside in Washington State. *
Who is completing the questionnaire?
How did you hear about this survey?
Please note...
The questions in this survey include language "you" or "your" but should be understood as referring to the person with the rare disease.
What is your gender identification?
What is your age?
What is your race/ ethnicity?
What is your zip code?
This is to help us make sure we are receiving proper representation in Washington State
Do you live in a rural, suburban, or urban area of the state?
What type of health insurance do you have?
Check all that apply
Is your rare disease a genetic (or inherited) condition?
Clear selection
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