RARE INSIGHTS |
Making the RARE voice heard
 LifeArc joins the NRG Collective’s #RareYouthProject as a 2018/19 sponsor LifeArc’s vision of collaborative approaches to improving outcomes for rare disease medicines has led to the medical research charity joining the #RareYouthProject. The project takes the form of a year-long programme that works with children and young people affected by rare disease. The project will create a magazine with articles that matter to Young People, written by Young People in the rare community.  Launched in 2017 by independent not-for-profit publishers, NRG Collective Ltd, creators of Rare Revolution magazine, this annual programme works with the young Rare community to ensure their voices are heard through the creation of their own dedicated Youth Magazine. The young editorial team are given complete control of topics, assignments and design for the magazine. The Rare Revolution Team, in collaboration with the RareTogether project, support all aspects of their journey from the initial planning meeting through to the successful launch of their final publication. The #RareYouthProject first project took place in 2017 finishing in March 2018 at a dedicated Youth Event in London where around 50 young people and their families took part in the Rare Youth Issue launch. The finished 2017/18 magazine is outstanding and a 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 Commenting on the collaboration Dr Catriona Crombie, LifeArc’s Philanthropic Fund Manager said; While LifeArc tends to be involved early in the process of developing new drugs for patients, a collaboration like this reminds us why we do what we do and allows us to better understand the needs of those affected by a rare disease Rebecca Stewart, CEO, NRG Collective Ltd, noted; “Following on from the success of our pilot programme we want to secure this project for future years to ensure our talented young rare community can continue to be heard and have access to the long-term benefits that come from the work experience, mentoring and friendships made during this programme. We are thrilled to have the support of LifeArc as Silver Sponsor of our 2018/19 Project and hope other companies will join them in supporting our annual programme.” The 2017/18 Rare Youth Issue can be read here https://bit.ly/2IBjAhL If you would like to find out more about supporting this year’s #RareYouthProject please contact Rebecca on rstewart@nrgcollective.co.uk  NRG Collective Press Contact Rebecca Stewart, Title, NRG Collective Tel: +44 (0) 13398 83838 Mobile: +44 (0) 7795663589 Email: rstewart@nrgcollective.co.uk LifeArc Press Contact Glenn Mursell, Communications, LifeArc Tel: +44 (0) 207 391 2754 Mobile: +44 (0) 7799 261 060 Email: Glenn.Mursell@LifeArc.org 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. About LifeArc LifeArc is a medical research charity with a 25-year legacy of helping scientists and organisations turn their research into treatments and diagnostics for patients. LifeArc is pioneering new ways to turn great science into greater patient impact. The charity brings together a network of partners to tackle specific diseases and directly funds academic and early stage research. So far, LifeArc’s work has helped to develop four drugs (Keytruda®, Actemra®, Tysabri® and Entyvio®) and a test for resistance to carbapenems. www.lifearc.org Twitter @lifearc1
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