RARE INSIGHTS |
Making the RARE voice heard
The #RareYouthProject is an initiative run by NRG Collective Ltd a not for profit independent publisher specialising in rare disease publications, education, signposting and community building. The #RareYouthProject involves children and young people affected by rare disease in the creation of their very own magazine. “This very special issue no. 1 is the creation of a team of 10 young people all passionate about having their voices heard. Young people affected by rare disease spend a lot of time having other people make decisions about them when it comes to their health and their own bodies and this outlet has been a wonderful way for these young people to gain some control and talk about the issues that are important to them” Rebecca Stewart CEO NRG Collective Ltd. “Our pilot team met in early 2017 to discuss the direction of the magazine and plan their dream assignments. We were amazed by the depth of the subjects they wanted to cover. With interviews with Government leaders, celebrities and Pharmaceutical leaders on their list, we had to work hard to make this a reality for them. I cannot tell you how proud we are of each and every young person who contributed. “The finished magazine is outstanding and testament to the hard work and passion that each member of the youth editorial team put into the project.” Nicola Miller Creative Director and Youth Co-ordinator. The project’s aim is not purely about “powering up young voices” but also provides participants with valuable real-life work experience often not available to young people with complex health needs and an opportunity to meet other young people who share their challenges. Rebecca Stewart explains “Very early on our pilot team identified isolation and lack of meaningful work experience as significant challenges that they wanted this project to mitigate against. Through joint assignments, mentoring, team meetings and a dedicated youth event we were able to significantly work towards this. Many of our team will be staying on to become youth mentors, contributors and bloggers for next year’s project and several have formed friendships which have lasted outside of the project.” With GOSH providing access to #RareRevolution, thousands of children admitted each year will now be able to enjoy the free publication for young people by young people. " We hope that this year’s team will be bigger and better and that the #RareYouthProject will be powering up young voices for years to come Nicola Miller Creative Director and Youth Co-Ordinator Join the #RareYouthProject If you are a young person aged between 8 and 23 years old and would like to find out more about being involved in this year’s project email Nicola on Editor@rarerevolutionmagazine.com If you would like to find out more about sponsorship opportunities with the #RareYouthProject contact Rebecca on rstewart@nrgcollective.co.uk About NRG Collective Ltd.
An independent not for profit company NRG Collective Ltd are dedicated to making rare voices heard. Through their free publications Rare Revolution and the Rare Youth Edition they are raising awareness and providing valuable information for the whole rare disease community.
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