"RARE Revolution: To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It's time to turn the tide!"
Turning the tide for RARE youth...
Quality news, for young people,
by young people
The RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.
Approximately 400 million people worldwide live with a rare disease, almost 50% of these are children and young people, and many more may be a young carer, supporting a loved one.
This platform is powering up young RARE voices to be heard and empowering a future generation of rare disease advocates.
RARE Revolution is a family that will never leave you behind. The experiences and memories I have I will never forget.
Favour and Precious
We want the RARE Youth Revolution to be a place where we can come together, have fun, make friends and be heard
Children and young people living with rare disease really value seeing others speaking out about their conditions, it makes them feel like they’re part of a community of people and that they’re valued and not alone
Meet The Team
Chelsea (22) is a recent Business Management and Psychology graduate from the University of Aberdeen. She was diagnosed with Lupus eight years at 14 and has had multiple surgeries and flare-ups since. Her
new normal became experiencing extreme fatigue, muscle and joint pain, brain fog and lack of concentration daily. She thrives on being around people and supporting them. She also plays table tennis where she has played for over a decade. She finds happiness in her creative pursuits in crocheting, drawing and making things, seeing it as an outlet to have fun and also create her own Etsy store. Writing especially gives her the opportunity to express her true feelings about what she cares about.
Youth Intern for Genetics
Katie is a well known face in the RARE Youth space contributing on multiple projects and as a guest blogger. Living with multiple rare diseases herself (Ehlers-Danlos Syndrome and Chronic Intestinal Pseudo Obstruction), Katie finds great joy in advocating for others with rare disease. She is passionate about transition from paediatric to adult care and has written and spoken publicly several times on this topic. She also runs Cards for Bravery, an organisation dedicated to brightening the days of hospitalised children. Katie will lead our Genetics and Relationships Project. She loves to read A LOT and enjoys exercising her creative streak.
Georgia has a rare condition called Friedreich’s Ataxia! is interested in anything health advocacy related and writing about everything in her brain. She graduated university with a degree in psychology and loves reading and painting!!
Dylan was diagnosed with MDP Syndrome aged 10. MDP stands for madibular dysphasia and is an extremely rare metabolic disorder which prevents fatty tissue from being stored underneath the skin alongside giving with deafness and progeroid features. He therefore struggles to walk barefoot and do physical activities.
His two biggest passions are photography and dancing which has helped him stay strong and positive. Photography has helped me to show people how he sees the world and dancing has helped him express his feelings and emotions, letting all the negativity wash away. He loves to spread positivity and kindness whilst raising awareness for MDP Syndrome and other rare diseases
Zainab (19) battles generalised Myasthenia Gravis (gMG). Diagnosed at 15, she endured many scans, tests and even a lumbar puncture to get her diagnosis in the end. For a long time, she did not feel comfortable sharing or talking about her condition except her immediate family because even if I mentioned MG, barely anyone knew what it was since it is a rare condition.
After winning the 2021 Student Voice Prize, she gained the confidence to open up about her journey and raise awareness for MG through her platform. She hopes by engaging with her blogs, posts or stories you can better understand what it’s like to live with a lifelong diagnosis from a young age so you can better support those around you!
Aoife (18) has just finished school and hopes to study English and history in college this autumn. She love animals and music and her favorite pastimes are crocheting, baking and reading! In 2012, she was diagnosed with left ventricular hypertrophy, then in 2017, she was diagnosed with Friedreich's ataxia and scoliosis. She's delighted to be part of this team as it gives her the opportunity to help and connect with others facing similar challenges!
Katrina (23) is a freelance journalist (and has written for Rare Revolution Magazine) and advocate for young people with invisible illnesses. She was diagnosed with systemic lupus at the age of 9 and has endured, like many rare young people periods in hospital, uncomfortable treatment and dependency on specific medication to stay well.
Her passion is raising awareness about mental health of young people with long term illness and disabilities and ensuring that it is high on the agenda of any support that’s offered to young people. Katrina enjoys both listening music and drawing, and has a website which she uses as a platform to share her experiences, advice and support to young people in similar situations to her own.