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My Experience at RAREfest22

Chelsea writes about her experience on planning for RAREfest22, including video editing the Mythbusters session, seeing her exhibit idea come to life and speaking her truth at Rare Youth Monologues.

From the 25th-26th November, I attended my first RAREfest22 and it was wonderful to see five months of planning come together on this special weekend.

As the youth coordinator at RARE Youth Revolution, my first ever task on my first day in the role was to come up with our event idea for RAREfest. That was back in July!

I came up with an interactive and fun idea, where we got audio wands from TourMate and had each number on them correspond to a number that was stuck to two cardboard cutouts of young people. Each number represented a young person sharing a symptom they experience while living with their rare disease and was accompanied by their personal story of life managing this symptom.

It was a rewarding process which required a lot of planning and organising (which I already loved doing) in order for it to all come together. I designed an internship postcard to go alongside our RARE Youth Revolution materials, chose the images for cardboard cutouts to be used so people could see ‘real’ people with their invisible and physical disabilities, printed and laminated numbers to correspond to each individual and collated all the audios together. I also have Joe (part of the RARE Rev team) to thank for helping create amazing videos to upload onto our YouTube channel in one playlist. This meant people could scan our QR codes to watch the videos in their own time during the event.

After months of planning, it was incredible to see it finally come together. But RareFest wasn’t just about us exhibiting, it was also about us absorbing all the other content there being exhibited and delivered during the programme of engaging talks.

I saw other people and organisations all here to dedicate time for the rare disease space. One of the reasons why I loved not only attending Rarefest as a speaker and stand holder, was the amount of people who were there for people like myself. I saw researchers keen to find cures, academics, scientists, founders of various organisations dedicated to specific conditions and much more.

Our exhibit was next to Medics4RareDiseases, which was very fitting, as we were thrilled to be collaborating with them on a talk. Another idea I had for RAREfest was to have a place for young people to present their issues that were important to them as young people living with a rare disease. That was when Jo Balfour of CRDN connected myself and Lucy, the CEO of Medics4RareDiseases—and the Rare Youth Monologues was born.

Sometimes we just need to stop and listen. Rare Youth Monologues gave an outlet to me, Katie and Eddie to choose a topic that we each thought was important and presented it to an audience with no introductions, applause or feedback. We just went one after the other in this hard-hitting performance to address how we were truly feeling. It was a truly empowering experience, where it was worth how anxious I felt before my monologue. I felt that my voice really did matter.

The night before, after a long day of travel, I got to enjoy a relaxing evening listening to various speakers. It kicked off by RARE Youth Revolution’s very own Raife and Eddison, who brought back their RARE Youth Quiz alongside a Mythbusters session. In preparation for the evening event, I worked with the boys to turn their raw videos into the final edited video. I was nervous to see what other people thought, but people seemed to really like it and thought the bloopers section especially was ‘okay’! Thank you Raife for that. You can find their full video here and why not take part in the quiz and let us know how you got on.

During the weekend I heard people speak or perform, all expressing themselves in different ways. We had Phil Jerky expressing himself through hilarious comedy, Dylan Lombard presenting his amazing photographs and telling us about his passion for photography and Unique Feet putting together a fabulous dance performance.

One of my favourite performances of the night was of John Willis, talking about assumptions and how your own personal assumptions, and that of others, can determine how you live your life. Living without fully formed arms or legs, it took him years to realise he was able to do more than he first believed he was capable of, primarily due to simple assumptions made by himself, his dad and his teachers when he was just a child. After years of being told he “couldn’t drive”, or couldn’t do this or that, John realised that with some accommodations he could drive, finally doing so at the age of 35 (he’s 62 now. Thanks to innovative adaptations, John also plays tennis, swims, and much more.

Armed with John’s insights I was able to answer a question I’ve never had before. One parent came up to me after my monologue to tell me how moved she was by it. I greatly appreciated her coming to me just to tell me this, but she also had questions. One question was where parents fit into the equation.

It goes without saying that parents should love their child unconditionally, whether they have a disability or not. Some onlookers may regard rare disease parents as 'brave' or 'selfless' by loving their child, but by doing that you might run the risk of making the child feel like a burden. Of course, it's difficult for any caregiver for a person with a rare disease, but after all it isn't them that live with a rare disease, so nobody else will ever truly understand how it really feels.

With John’s insights fresh in my mind, I referred back to his story.

I told her how just one piece of advice would be to let your child get at it—get at life! I was very fortunate that despite me living with a rare condition, my parents always believed I could do anything, especially my dad. My mum was always the realist, she was more scared, but neither of them ever made me feel I couldn't do something. But these simple assumptions, especially made as a child when you are more impressionable can mean everything. It could mean the difference between a child believing they can’t do something, to having the confidence to give it a shot.

There were many parents at this event, and I was heart-warmed by how much they were willing to learn. Not only were there wonderful experiences shared, but I also heard some truly awful ones. Such as one parent telling me how one doctor asked his son at the age of 16 ‘what is it like to live a life where you will die before the age of 40?’ I was speechless, I was appalled! But this is what RAREfest is about—to shed light on these experiences and to make people feel they can not only talk about it openly but express the need for change.

A medical student came up after our monologues too, to not only show his gratitude for being able to experience such a moving performance, but to ask us how he could help. As a future healthcare professional, he came to RAREfest to explore all the various things people and organisations were doing and wanted to learn from us what current healthcare professionals were doing and how to make sure he does the opposite—that he does better.

Attending Rarefest22 was an exceptional opportunity. I got to share my truth through my monologue, finalise Raife and Eddison’s excellent Mythbusters video and see my exhibit idea come to life, sharing the voice of my fellow RARE Youth contributors: Katie, Joe, Amelia, Aoife, Barney, Zainab, Katrina and Eddison. It was a true honour that our RARE Youth got to both open the event on the Friday evening, and close the formal event with our monologues, perfectly bookending the event with the voice of our youth community.

During my time at RareFest I was able to meet so many amazing individuals, connect with organisations, all in a similar boat in their goal—to make the rare disease space safe, accessible and better for everyone. I already cannot wait to attend the next one in 2024!



LinkedIn @chelsea-wongg


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