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Meet your new Youth Coordinator

Updated: Aug 23, 2022

Chelsea Wong introduces herself as RARE Youth Revolution's Youth Coordinator

My name is Chelsea Wong and I am the new RARE Youth Coordinator, but you can call me Chels. When I found out about this opportunity, I jumped at the opportunity to be part of RARE Revolution. I have a great passion for helping people, especially within the rare disease space. I was diagnosed with lupus at the age of 14, which has definitely made my life interesting to say the least. It created a new normal where since then, I’ve been in and out of hospital, have monthly infusions and have also been diagnosed with lymphocytopenia and hypermobility. To say I resonate with individuals within the rare disease community would be an understatement, but it’s why I love to advocate for us.

In July 2022, I graduated from the University of Aberdeen with a first-class honours in Business Management and Psychology. I was underestimated due to my health conditions. I get it though, I lose concentration a lot faster, I take longer to complete tasks and sometimes I just can’t work at all. But I have never been one to let my conditions stop me. They might make things harder, but I always find a solution to still be able to do what I want to do. I learned to be more organised by prioriting when I have the energy to do things and I persevered. Although there will be days that are unbearable, I try with all my strength to live my life to the fullest - I encourage everyone to do the same and find that positive perspective out from the shadows.

I’m hard-working and self-motivated, so I really liked being busy to fill up my time as much as possible. During university, I was active in three societies, where I also committed to them through being on their committees. I was the president of the table tennis club where I have played table tennis for over a decade. It's one of my release systems, where I can socialise, relax and continue to play the sport I love. I was the social media officer for the Economics and Business society as I have an interest in social media creating and if I wasn’t interning here, I’d be studying a masters in Digital Media at the London Metropolitan University. So knowing social media was part of the job I'll be doing definitely excited me a lot and I've got many ideas for our various platforms! Lastly, my love for writing landed me the head editor position with Her Campus, a global online magazine run by university students and an internship with Injection Magazine for six months. Whilst I used to write a lot of fantasy, I now spend my writing on articles about topics I'm deeply invested in. This includes chronic illness and disability, whilst also writing about racism which I've suffered a lot being living in the UK as a Chinese individual and sexuality as a Demisexual. So if you think I'm going to stop there, you would be mistaken, as I can't wait to write articles for RARE Youth too, where I know I'll be given a voice.

In the rare occurrence I have free time, I like to dive into artsy pursuits. I find happiness in making things with my hands, where I learned to crochet, draw and write mainly when I want to tap into my creative spark. I've crocheted tops, plushies and much more whilst drawing digital prints. As for writing, I hope one day I am able to write a novel centred around a disabled figure. I advocate massively for representation within this community, as well as my race where sometimes I fail to see Chinese people represented fairly and accurately. My love for creating has also led me to start my own Etsy store, which I hope to grow bigger each day, where I’m currently working on a line dedicated for the rare disease community with other people sharing the same idea.

One of the biggest reasons I applied to intern for RARE Youth is because of my love for advocating for our community.

It gives me great pride to be part of a movement advocating for our rights, spreading awareness, sharing my story and hearing others.

I was a student notetaker at Aberdeen University for students with disabilities so they are able to have sufficient notes to help with their education. I’m also the administrative volunteer for Cards for Bravery (CFB), an organisation who strives to brighten up the days of hospitalised children with an uplifting positive card. It was important to get involved with CFB as I received a card from my brother when I was first diagnosed, signed by everyone at school who knew me. I greatly appreciated the gesture and made me appreciate the simplest of things. Having a lovely support network has always been my striving force in being able to live my life the best I can.

I am really looking forward to making my mark in RARE Youth Revolution. In case you couldn't tell already, I love writing, creating (including for social media) and even administrative tasks as I love to be organised. I felt this role was perfect for me and I will be constantly brainstorming ideas for revamping our social media platforms and websites, creating events and talks and look forward to working with such an incredible and aspiring team!

If you would like to get involved in the RARE Youth Revolution please drop me an email. I look forward to hearing from you.


Facebook @chelsea.wongg

Instagram @_chelseawong_

LinkedIn @chelsea-wongg


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