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Powering up the voices of the youth rare disease community
RARE Youth Resources
Capturing RARE Youth Voices Survey resources
Capturing RARE Youth voices was a survey conducted in collaboration with TREND Community with the hopes of collecting information to further aid research into rare diseases, and to find out how young people with rare diseases are expressing themselves and connecting with peers online.
The resources for this survey can be found below for viewing in detail and downloading.
Which social media platforms do you use most to LEARN and converse about your condition?
The information for this question for all 4 ages groups.
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Which social media platforms do you use to INTERACT with others living with rare disease?
The information for this question for all 4 ages groups.
Click the image to view, download and print
Capturing RARE Youth Voices results in full
The full pdf file with the results from the Capturing RARE Youth Voices survey.
Click the image to view, download and print