TREND Community and RARE Revolution Magazine Release Findings of First Survey: “Capturing Rare Youth Voices”

Picture of Sefton Eisenhart
Sefton Eisenhart

TREND Community, RARE Revolution Magazine and RARE Youth Revolution are excited to release findings from our first Rare Youth Survey.

The purpose of this survey was to find out where young people were spending their time on social media. We want to make sure that the large number of young people facing rare diseases of all kinds have a voice. Too often, because of their age, the outlook of the youth is not taken into consideration. That does not mean that they are not voicing their opinions, it just means that stakeholders might not be paying attention.

Our survey attracted respondents from over 15 countries around the world. We feel that such a diverse response helps paint a more international portrait of where young people are spending their time on social media.

Another interesting trend is that younger people seem to spending less time on Facebook. Instead, they interacting, posting, and sharing on newer platforms. The older the respondents were, the more likely they were to be on Facebook. This means that we have to diversify the places we look to capture the voice of the youth community. As has always been the case, young people are on the forefront of social media technology, and older generations are usually late to the party.

We need to be aware of how young people are embracing new social media platforms, not only as a means of amplifying their voices, but as a means of facilitating connections. One of the benefits of social media is the ability for individuals to come together and create communities. The power of people facing the same rare condition coming together is immense. We want to help create those kinds of tribes, and help them tell their stories.

To see the full survey results click here.