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Chelsea Wong is the Youth Coordinator for Rare Youth Revolution (RYR). Rare Youth Revolution is a global news and opinion, digital magazine platform, dedicated to powering up the voices of the young people in the rare disease community. They aim to bring quality news, for young people, by young people.

They are part of, but different to, their main magazine, Rare Revolution which focusses on adults living with a rare condition. Rare Youth Revolution instead, focusses on young people living with a rare disease as that is an entirely different audience. Their aim is to amplify their voices and give them a safe space to feel heard. As Chelsea explains:

We want young people to feel supported and safe in telling their story and to know they are being heard and listened to. Rare Youth Revolution is about empowerment and inspiring open and authentic stories told by young people for young people.

Chelsea, in her role as Youth Coordinator and also living with a rare condition herself is well-placed to coordinate and support the wide range of opportunities for these young people. She can help them raise awareness about their specific condition in a range of formats from writing to video, art, and social media campaigns. Chelsea is delighted that one of their initiatives called Rare Talks provides an opportunity for people living with the same rare disease to discuss, through video, the surrounding issues of living with the same condition. It also gives them the chance to share similarities and differences of their lives, despite living with the same rare disease.

“I was trying to find that perfect balance for me, being able to express myself in a work environment, and work well whilst living with my condition. So, this seemed like the perfect fit, so I just went for it and here I am!”
Chelsea Wong

Youth co-ordinator

Exhibiting at RAREfest22

One of Chelsea’s first tasks was to sort out their presence at RAREfest22. She will be contributing in two ways. The first is a session called Rare Monologues, where the RYR team will work in collaboration with Medics4Rare Diseases. Four people from the RYR team will perform a short monologue speaking about difficult conversations. This includes medical gaslighting, trying to put your foot through the door, advocating for yourself in medical appointments and trying to be heard. All topics can be difficult to speak aloud and be incredibly overwhelming, especially for young people. This impactful session invites these young advocates to speak to the room and feel listened to.

RARE youth Revolution Experience

Secondly, Chelsea is bringing an interactive session as an exhibitor. Her stand will showcase the human body with numbers on it. Behind each number will be an audio of symptoms relating to that specific area. Plus, it provides further information of a lived experience by a young person about their actual condition rather than just the symptom itself. Chelsea explained the rationale:

I have tried really hard not just to make it educational, but also interactive and easy to follow. I also wanted to make sure it was very personal. When people listen to these audios, they will be listening to an actual person who is talking about their condition. I want the public to see the variety of rare conditions, but also how young people differ and go about their lives in a different way once they have adapted to those symptoms, since they have been diagnosed.

Come and see Chelsea and her Youth Team at RAREfest22 and see for yourself the issues that matter to young people living with a rare disease and how young people live positively with their condition!