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The RARE Youth Revolution has begun

OPEN Health are proud to support RARE Revolution Magazine who have launched a dedicated RARE youth online platform powering up the voices of the youth rare disease community.

RARE Revolution Magazine are excited to announce the launch of the RARE Youth Revolution movement, along with its new online home at

This online platform is giving a voice to the youth of RARE, sharing news and views on a fresh and innovative, accessible platform, with content that is created by children and young people affected by rare disease—FOR children and young people affected by RARE, ensuring their voices are heard.

A dedicated online rare disease platform for young people

There are many adult communities and support groups in the rare disease space, but children and young people have struggled to find an outlet, and following the success of our #RAREYouthProject pilot in 2018 we have been working hard to address this inequality and fill that void.

While we have all been hunkered down in lockdown, we have been working immensely hard with our focus group of children and young adults to drive forward this initiative and now we are ready to share it with the youth rare disease community of the world.

The website is a focal point for this movement, empowering young people to share their experiences through storytelling, be it writing, video, art or audio, and to enable them to become connected to what is happening in the rare world—sharing news and events, science and technology, charity and advocacy, in an age appropriate way through the voices that matter to them—theirs!

The RARE Youth Revolution is empowering and connecting children and young people affected by rare conditions so that they know they are not alone.

Our youth focus editorial team are meeting weekly to progress exciting campaigns and assignments which will be released throughout the summer and beyond, and there are many existing plans in the making.

“The seed of this project was first planted in 2017 and to see this vision now come together is a wonderful milestone in the RARE Revolution journey, and myself and the whole team are incredibly excited to watch this grow and see where our children and young people take this. It is a real watch this space moment for us all!” Nicola Miller, editor-in-chief and co-founder, RARE Revolution Magazine/RARE Youth Revolution

The story behind RARE Youth Revolution

Approximately 400 million people worldwide live with one or more of over 7,000 rare disease, almost 50% of these are children and young people, and many more may be a young carer, supporting a loved one.

This platform is powering up young RARE voices to be heard and empowering a future generation of rare disease advocates. RARE Youth Revolution is an initiative by RARE Revolution Magazine (a first of its kind digital magazine giving a voice to those affected by rare conditions, the charities that represent and support them and industry professionals). The initial concept was a dedicated youth programme, empowering children and young people to have their RARE voices heard by supporting them with a structured mentoring and work experience programme, where they produced their own online magazine RARE Revolution Magazine Youth Takeover! This online launch marks a big step toward reaching more young people globally, to elevate more voices and to help more children and young people gain valuable experience in media, storytelling and advocacy.

“Children and young people living with rare disease really value seeing others speaking out about their conditions, it makes them feel like they’re part of a community of people and that they’re valued and not alone.” Elena-May Reading, youth contributor to RARE Youth Revolution

The #RAREYouthRevolution is supported by:

  • Breaking Down Barriers
  • British Paediatric Surveillance Unit (BPSU)
  • LifeArc
  • Sobi

“We are a proud supporter of RARE Youth Revolution and we are absolutely thrilled to have them as part of the Breaking Down Barriers project! Our aim is to support patient organisations, support groups and community networks to develop supportive and inclusive services. We love that the RARE Youth Revolution is enabling children and young people to have a voice and a platform where they can come together to share knowledge, experiences and expertise about living with a rare condition. We look forward to seeing how this initiative progresses and want to wish everyone the very best of luck! From everyone at Alström Syndrome UK and the Breaking Down Barriers project.” Kerry Leeson-Beevers, National Development Manager and Project Lead for Breaking Down Barriers

“From little acorns grow mighty oaks and with the enthusiasm the young people have put into RYR, I have no doubt these saplings will spread far and wide. Vive la Revolution.” Richard Lynn, British Paediatric Surveillance Unit (BPSU)

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Join the RARE Youth Revolution

Would you like to join our RARE Youth team to help guide the direction of this movement?

Perhaps you’re an aspiring blogger or vlogger and would like to contribute your story?

If you are then drop our youth editor, Daisy Marriott an email at

Are you an industry changemaker who would like to support the voices of the RARE youth?

To find out how you can be a part of this exciting revolution and empower the youth rare disease community then please get in touch with Rebecca Stewart, CEO, RARE Revolution Magazine

15th June 2020


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