News & Opinion Youth
Magazine
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.
OUR YOUTH TEAM
YOUTH COORDINATOR
James Brooks
Youth Coordinator
RARE Youth Revolution
Niemann-Pick Disease Type B
YOUTH AMBASSADOR
Georgia Hart
Young adult (Teens+) volunteer
Friedreich’s Ataxia
YOUTH AMBASSADOR
Eddison Miller
Kids (Under 12s) volunteer
Xeroderma pigmentosum
Our Revolution...
Jazz
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
Elena-May
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