Please login to the form below

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)

Pink divider

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


Company Details

OPEN Health

+44 1628 481112

Contact Website

The Weighbridge
Brewery Courtyard
High Street
United Kingdom

Latest content on this profile

Drive, Discover, Dive_OPEN Health
Learn how to unlock the power of simplicity in complex omnichannel healthcare communications.
OPEN Health
Novel Oncology Therapies Require Innovative Methods in Oncology Modeling
Innovative methods in oncology modeling are needed to demonstrate the value of many new cancer treatments, including immuno-oncologic therapies.
OPEN Health
The CM Group rebrands to OPEN Health
Following its acquisition by OPEN Health in 2022, The CM Group, a US healthcare agency offering a suite of solutions to the biotech and pharma industry, has undergone extensive rebranding and will now be known as OPEN Health.
OPEN Health
OPEN Health to acquire leading US-based life science strategy and advisory firm Acsel Health
OPEN Health to acquire leading US-based life science strategy and advisory firm Acsel Health
OPEN Health
OPEN Health Appoints David P. King as Non-Executive Chairman and Paul Carter as Independent Board Member
OPEN Health has announced additions to its board of directors, appointing David P. King as non-executive Chairman and Paul Carter as an independent board member.
OPEN Health
Steve Chick joins OPEN Health as Chief Growth Officer for Evidence & Access
OPEN Health is pleased to announce the appointment of Stephen J. Chick as Chief Growth Officer for OPEN Health Evidence & Access.
OPEN Health