Daisy Marriott

Daisy Marriott is 24 years old and lives in Kent. Her position at RARE Revolution Magazine has enabled her to do what she loves whilst helping others. Her role as Youth Editor means she can support other young people like herself. Daisy feels passionately about helping young people find a place where they feel comfortable to share and connect with others whilst harnessing and showing off their brilliant creativity!

Daisy was diagnosed with Cholesteatoma when she was in her teens which resulted in hearing loss, this was a difficult time for her. As she learnt to adapt to her post rare life she sometimes felt isolated and she hopes to help others not feel alone in what they are going through. She feels the RARE Youth Revolution is connecting whilst empowering these young people and providing them with a platform to really have their voices heard!

The RARE Youth Revolution is an online platform powering up young RARE voices to be heard and empowering a future generation of rare disease advocates. 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. “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.” Elena-May Reading, youth contributor to RARE Youth Revolution.

We understand it is not easy for young people to find a space where they feel comfortable to open up about living with a rare disease with that in mind we have created a fun and interactive news platform for like-minded young people to share their rare disease journeys and open up about how they truly feel to be growing up in the world with a rare-difference. The platform enables each individual to express themselves through their chosen medium whether that is written word, spoken language, vlogging, art or any and all means that resonates with them.

RARE Myth Busters
The problem with rare disease, conditions and disabilities is that there is sometimes very little awareness and education around the subjects and they can often be invisible or difficult to spot. Sometimes people who don’t know the ins and outs about a condition can make some strange assumptions when it comes to making observations and conversation about health.

Have you ever been told you don’t look sick? Or maybe someone has asked you a question about your disability that has left you cringing inside. Well the RARE Youth Revolution are here to start busting these myths! We want to educate and inspire with our Myth busting session and explain away any pre conceptions people have about rare conditions. If you want to take the spotlight and have a go at turning fables into fact here is your chance!

Who is your hero?
Nicola Miller for inspiring me to help others and work in the rare disease world!

Where is your favourite place in the world?
Cornwall, St Ives, you could be in the Caribbean on a good day.

What is your greatest achievement? 
Completing my dissertation and graduating with a philosophy, religion and ethics degree and working for RARE Rev.

What is your wish for the future of rare disease? 
I wish young people and all ages have the confidence to express how they feel about living with rare disease and that they find treatments!