My year at RARE Youth Revolution

I joined RARE Revolution in March 2021 in the role of RARE Youth Coordinator, as a 12-month internship. A friend from Niemann-Pick UK had let me know about the job and I immediately jumped at the opportunity to put my experience as a rare disease patient to use helping other young people.


The young people are so much of what makes this job special. The team of young people behind RARE Youth Revolution are some of the most inspiring rare disease advocates you could ever come across, to the point where it can be a little intimidating. They make me wish I had been more involved with the rare disease community when I was younger.


I started at RARE Revolution under the supervision of Daisy Marriott, who was the then Youth Editor for RARE Revolution. Daisy had instrumental in developing the online platform for RYR and shaping the early direction and it was her job was to show me the ropes of RARE Youth Revolution, the Instagram, Facebook, and YouTube pages, and then ultimately hand over the reins of responsibility for the RARE Youth to me.


I owe a lot to Daisy; she was incredibly helpful and supportive when I first started and made it so much less painless when I took over and started running things on my own.


But Daisy is not the only person at RARE Revolution that I have been in awe of. RARE Revolution is a small team of the most incredibly hardworking, passionate, smiley people you will meet in your life, and I will miss every single one of them.


One thing I am very proud of from my time at RARE Revolution is the blog series “Letters to my Younger Self”. The series now consists of 10 blog posts, seven of which were edited and posted during my time as youth coordinator. I was also lucky enough to write my own blog for the series, advising my younger self on growing up with NPB.


I am amazed as to how diverse the series is and how each person who wrote a blog produced such wonderful, individual pieces of work. It makes me very proud to have been a part of such an amazing project.


But Letters to my Younger Self is just one of the projects I’m so incredibly proud to have been a part of. During my time at RARE Youth Revolution, I have worked on so many projects that I’m proud of; from the RARE Talks video series to the Illuminating RARE Talent Internship Programme that will be coming to you all very soon!


My time at RARE Revolution has shown me that the people, especially the young people, of the rare disease community are even more incredible that I already knew. I am so grateful to have met so many passionate and creative young advocates (albeit over zoom!) and I know that they will continue to make this community special, and I am excited to see where they take the RARE Youth Revolution next…


 

“One of the highlights of emerging from lockdown in the UK was an opportunity to meet with James in person to discuss all he had achieved during his internship at RARE Youth. The importance of self-advocacy and investing in young people living with a rare disease was at the heart of every comment, suggestion or thought. While we laughed a lot, what impressed me was the visionary way James could interweave his own experiences of diagnosis and living with a rare disease into asking those insightful questions of what was needed and what would have impact going forward. He is ever mindful that rare disease is not one thing and that what we experience at various ages determines what is important to us at different times in our lives. Illumina is enormously proud to support the RARE Youth programme and to enable this internship and the investment it facilitates for advocates like James. Thank you for all you have achieved James. But I want to say with even more confidence, thank you for all you will go on to achieve.” Shirlene Badger, Patient Advocacy Lead – EMEA, Illumina Inc.



 

About James the RARE Youth Coordinator Internship from our Creative Director, Nicola Miller: The RARE Youth Coordinator internship is part of a much bigger initiative we are rolling out throughout 2022, and James was the first intern to come on board as part of this. But what was extra special about his role was that he has been able to be directly involved in shaping the Illuminating RARE Talent programme which will impact not only his predecessor but also many other young people who can benefit from uplevelling their careers through this innovative and ambitious workplace programme.


James very quickly became an integral part of the RARE Rev family and will be greatly missed by the whole team as he moves on to his next exciting career step. We hope very much that his experience with us has given him a broad experience across many activities developing his creative and strategic skills whilst also building his self-confidence in the value he brings to the world of work.


We are all very excited to see where James takes these skills next…


 

If you think you have what it takes to be our 2022 RARE Youth Coordinator and would be interested in joining the RARE Rev team for a 12-month paid internship we would love to hear from you.


You can get involved with the RARE Youth revolution by finding us on Instagram @rare_youth_revolution and on Facebook @RareYouthRevolution

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