Industry News

New online magazine supports young people affected by rare diseases

8 Jul 2020

RARE Youth Revolution aims to empower a future generation of advocates

Rare Revolution Magazine has launched an online platform to give a voice to children and young people affected by rare disease.

The RARE Youth Revolution website is a focal point for a movement of young people, empowering them to share their experiences through storytelling – be it writing, video, art or audio.

It will also allow them to connect to what is happening in the rare world – sharing news and events, science and technology, charity and advocacy, in an age appropriate way.

“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,” said Elena-May Reading, youth contributor to RARE Youth Revolution.

There are many adult communities and support groups in the rare disease space, but children and young people have struggled to find an outlet.

“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,” said Nicola Miller, editor-in-chief and co-founder, RARE Revolution Magazine/RARE Youth Revolution.

“It is a real watch this space moment for us all!”

Whilst in lockdown, the RARE Revolution team were working hard with their focus group of children and young adults to drive forward this initiative, which grew out of the success of the #RAREYouthProject pilot.

The youth focus editorial team continue to meet weekly to plan exciting campaigns and assignments which will be released throughout the summer and beyond.

Approximately 400 million people worldwide live with 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 aims to empower a future generation of rare disease advocates.



Related articles