Rare Revolution and the #RareYouthProject

When the team behind Rare Revolution were asked to create a rare disease magazine for young people, the one thing they knew right from the very start was that this wasn’t something they could put together alone. They needed the right sort of help, and so it was, that the idea of creating a magazine for young people turned into a project where young people created a magazine for themselves.

The 2017/18 #RareYouthProject launched on the 28th February 2017 and the recruitment process began. By May they had assembled a team of 10 dedicated young people set to making a difference to their peers and to how the world hears what they had to say.

During their inaugural meeting and following skype meetings the new youth editorial team set the following vision and aims which, are now well established as the project begins its second year.

Project Vision: The talented team felt under-represented and that their voices and opinions were not being heard. The Youth Team identified three major challenges they wanted to do something about.

1. No platform to have their say and be heard

2. Isolation

3. Lack of work experience opportunities

The project vision became to create a programme for young people, affected by rare disease, to share their experiences and views in a community they could take ownership of. A programme that brought young people facing the same challenges together to forge new friendships that would hopefully continue long after the programme was complete and provide a yearlong, real life work experience opportunity.

Project Aims:

- Platform - Create platforms where young voices can be heard

- Combat Isolation - Create opportunities to build new friendships by connecting to others who understand

- Work Experience/Connections - provide opportunities for real life work experience, learn new skills and make connections that will be enablers in their future

- Raising their Profile - Provide opportunities for young voices to be heard by policy and decision makers

- Belonging - Create an environment that young people feel they have ownership of and belong to.

And what was the outcome? Well that exceeded the team’s wildest expectations. 

“Our talented team rose to every challenge and assignment they set for themselves. They behaved with the upmost of professionalism, they were passionate in their roles and they delivered the world’s first rare disease magazine for young people living with rare disease.” Rebecca Stewart CEO

As the organisers begin to recruit their 2019/20 team and look for all-important sponsors, they have been reflecting on the impact of this project. What did involvement mean to those who took part? 

“It meant, real time work experience, new friendships made, opportunities to spread their rare messages to politicians and celebrities and wonderful articles shouting out to the world about what is important to our young rare community” Nicola Miller Youth Coordinator. 

However, this quote from young Current Affairs Correspondent, Annabelle, is more than enough of a reason to ensure this project is sustained for the future:

"I was able to prove I was not just the blind girl"

Annabelle (11) during her interview with Sophie Wells MBE 

Cameron (17) Political Correspondent interviewing Andrew Bowie MP

Rowan (13) Youth Editor quizzing the First Minister on her knowledge of rare disease 

Elena-May (23) interviewing Martin Andrews Rare Disease GSK on the role young people can play in informing pharma

For more information about our RareYouthProject please get in touch at rstewart@nrgcollective.co.uk And visit https://www.rarerevolutionmagazine.com/rareyouthproject.html

Rare Revolution Magazine | www.rarerevolutionmagazine.com 

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