Empowering young people affected by rare disease
350 million people globally live with a rare disease and many more are directly affected by over 8,000 known rare diseases. Over 80% of these occur in childhood. Living with a rare disease can cause isolation and lack of opportunity for our young people.
We want to change that, and you can help us!
Join our #RareRevolution
Our journey into rare disease started in 2012, when my son was diagnosed, with xeroderma pigmentosum (XP). Since then, we (sisters, Nicola Miller and Rebecca Stewart) have founded a dedicated XP charity which has grown to have global reach. Following our own frustrations with access to research and having our rare voice heard, we decided just over 12 months ago, to launch a not-for-profit, free subscription magazine and online community, and this has fast become a special place for adults affected by rare disease, from all walks of life so share their experiences and support each other.
But, what we know from talking to children and young people affected by rare, is that they feel under-represented and that their voice and opinions aren't heard. They, and we, feel it is time that the balance is redressed.
Our vision is to create a platform for young people affected by rare disease to share their experinces and views in a community they can take ownership of, where their stories can be told in the voice that matters - theirs!
We want to see this as a FREE resource, distributed globally to children and young people affected by rare and across schools for peer education.
Through this project we want to counter the lack of real work opportunities often experienced by this youth community and allow them to realise their full potential.
Here’s how we are going to do this
Rare Revolution Magazine is created by NRG Collective which is a not-for-profit organisation, founded by two sister's Nicola Miller & Rebecca Stewart. We have teamed up with the RARE Together Project by the BPSU and Larissa Kerecuk of Birmingham Children's Hospital, Rare Disease Centre to create an innovative youth project.
Our youth project brings together a team of ten children and young people aged 8 - 22 years old to form our first ever youth editorial team, creating a dedicated rare disease publication for kids-by-kids.
Through real time experiences and mentoring, in their appointed roles (i.e editors, columnists, correspondents, photographer etc), these young people will get to the heart of the issues that matter to them.
They will engage with their rare disease peers globally, and shape the magazine, creating a first of its kind community and publication. From content, to artwork and video blogs, and everything from conception to launch, this team will be at the helm and the driving force.
Through taking part, these young people will benefit from social interaction, build lasting friendships and gain confidence as well as acquire practical work place skills which will help prepare them for their journey ahead.
This project will run over a two-year cycle. The first as an active member of the editorial team, the second as a mentor to the next incoming editorial team, where they can further grow in confidence and gain experience in communication and leadership skills.
The lasting legacy of this project, is that, through creation of the youth publication, they will inspire, educate and empower their readership of young people living with RARE across the globe.
They might even teach the adults a thing or two!
Access to this publication will be both digital and in hard copy and distributed for free as funding allows.
You can join us
We have already been working very hard and secured some project partners and investment, but we need your help.
We need to raise a further £20,000 to make this project a reality and give our eager team of budding editors, journalists and creative writers the opportunity to create something very special for young people and carers who live with the challenges of a rare disease.
As a thank you for your support
To show our love and thanks for your generous support you will receive the following:
£20: A hard copy of Rare Revolution Youth Edition magazine
£50: A signed hard copy of Rare Revolution Youth Edition magazine
(signed by the full team)
£100: A signed copy of Rare Revolution Youth Edition magazine
plus entry into our weekly prize draw to win a ticket for the
magazine launch party for you plus one guest (one entry per
We have a range of exciting, bespoke opportunitites for corporate investors. If your company would like to become a proud project sponsor, pledge one of the following amounts for some great perks!
Contact Rebecca Stewart: firstname.lastname@example.org to discuss.
£1,000, £3,000, £5,000, £10,000: