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Rare Disease Campaign 2020

Dawn of the RARE Youth Revolution!

Daisy Marriott, RARE Youth Editor opens up as to why she feels so passionately about the online platform making a difference to young people living with rare disease.

Filtered perception

Growing up in today’s world can be challenging. The pressure from today’s society to be cool and successful is huge; and the added strain of the obligation to showcase our every success on social media can sometimes feel like there is no room for error or imperfection.

Since when did anyone share a photo of a boring ready meal they had for dinner, or write about the argument they had before the perfect family photo was taken? It feels like we are living life through a constant filter. As a young person living with a rare or complex health condition, this pressure is magnified. Your life doesn’t look like the Instagram-ready life of your peers and this can feel incredibly isolating.

Growing pains

I know this firsthand, from my experience of being diagnosed with a rare condition in my teens and growing up with a hearing disability. Sometimes, it felt like society had ingrained into me that being different was not something to shout about and being disabled was something to be ashamed of, that induced pity from others. Now, in my twenties, I am learning that this is not the case, and this is not ok!

Although things have progressed in recent years, with more awareness around disability, there is still a need for increased accessibility and diversity in all forms. Sadly, many young people living with rare diseases feel like no one is listening or, worst still, that their conversations are being ignored. They feel there just isn’t a space in which they are comfortable to express themselves honestly about their life experiences – a space where no filter is necessary!

A RARE voice

We want young people to feel supported in telling their story and for them to know that they are being heard! The RARE Youth Revolution isn’t about sad stories, it is about inspiring, truthful and authentic stories told by young people, for young people. We are reframing the conversation, with the aim of normalising talking about rare diseases, as a part of life and not a taboo!

The RARE Youth Revolution (RYR) has been created so that young people who are living with rare and complex conditions feel they have a safe space to speak up and can do so in a range of formats from writing to video, art to podcasts.

Powering-up platform

Our vision for the future is to address the topics that children and young adults feel passionate about. Whether in healthcare, politics or social, RYR is a platform to engage the youth community and help them to create an impact where they can see outcomes from their efforts. This movement is being driven by a young community, who want a new way of looking at disease and disability that reflects their experiences!

The project has had an amazing response, with young people coming forward to share their stories and be involved. Via beautiful poetry, advocacy, signposting tips and more, our young community are having their say and sharing their unique insights. In doing so, we hope that other young people realise they are not alone and that someone is listening.

The RARE Youth Revolution is so much more than just a platform. As a youth programme we also support this young community through skills-development and internships, providing opportunities to showcase and nurture their talents and educate workplaces on the benefits of an inclusive workforce.

These young people are shaping the RARE Youth Revolution movement at every level and are bearing the torch for the future of rare disease advocacy. Looking at what they have achieved so far, the future of rare disease advocacy is in safe hands!

To find out more and to join the revolution, please visit www.rareyouthrevolution.com and follow us on social media: 

Instagram – @Rare_Youth_Revolution
Facebook – @RareYouthRevolution

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