SOBI “Power up Young Rare Voices” – Could You?

As part of its commitment to supporting people with rare diseases, Cambridgeshire-based speciality healthcare company Sobi are continuing their support of the #RareYouthProject, a year-long programme that works with children and young people affected by rare disease.
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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.
Giving complete control of topics, assignments and design to the young editorial team The Rare Revolution Team in collaboration with the RareTogether project support all aspects of their journey to support the successful launch of their final publication.

The 2017/18 Youth Team out and about on assignment

We are proud to continue our support of this great initiative, as part of Sobi’s commitment to the rare disease community. It is wonderful to see such a brilliant 2017/2018 Rare Youth issue of the magazine, and to hear from the vital and vibrant young voices which make up the community. We would encourage as many young people as possible to get involved in the coming year, to share their stories, and continue to build on the success of the #RareYouthProject

Neil Dugdale, General Manager, SOBI UK and Republic of Ireland

The #RareYouthProject recently celebrated Great Ormond Street Hospital hosting the 2017/18 Rare Youth Edition through all 415 of their bedside interactive screens allowing an extra 40,000 young people each year to have access to this resource.
http://www.rarerevolutionmagazine.com/blog/great-ormond-street-hospital-join-the-rare-revolution
“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 as well as an opportunity to meet other young people who share their challenges. We are thrilled to have Sobi’s support with our 2018/19 project.” Rebecca Stewart CEO NRG Collective Ltd.

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The 2017/18 Rare Youth Issue can be read by clicking the front cover below.

If you would like to find out more about supporting this year’s #RareYouthProject please contact Rebecca on rstewart@nrgcollective.co.uk

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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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About Sobi

Sobi is an international rare disease company dedicated to providing access to innovative treatments that make a significant difference for people with rare diseases. We have two business areas: Haemophilia and Specialty Care. Our research and product portfolio is primarily focused on haemophilia, inflammation, and genetic and metabolic diseases.
The United Kingdom and Republic of Ireland team is based in Cambridge and have been rated as the best company in Haemophilia in the UK through an annual independent survey in 2016 and 2017 and one of the UK’s great places to work in 2017.