News & Opinion Youth
Powering up the voices of the youth rare disease community
"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.
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 (21) 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.
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