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Meet your new RARE Youth coordinator

Well, hello there. My name is James Brooks, and I am your new RARE Youth Revolution Youth coordinator, and I suppose this blog post is my way of introducing myself

You may be thinking “Hi James, that’s brilliant, but who are you, and why are you here?”

Both very good questions, but we should start with the first question, who am I?

Well, first and foremost, I am a rare disease patient myself.

At age 3, I was diagnosed with Niemann-Pick disease Type B (NPB), which is a lysosomal storage disease that affects my liver, spleen, lungs, and a whole load of other things. I could go on, but it would involve all kinds of long words and confusing science that I do not fully understand myself.

Now nearly 24, I am a recent graduate of Roehampton University, and for the past four years I have been enrolled in a clinical trial which is helping to treat my NPB.

With the condition being so rare, I have spent a lot of time explaining both my condition and the treatment for it to people who look at me and think that there probably isn’t anything wrong. Something I think a lot, if not all of us struggle with.

So why am I here?

Well, at university, I managed to balance uni work with the treatment for my condition and came out with a degree in Journalism and Creative Writing. So, naturally when the opportunity to work for RARE Youth Revolution arose, it was as if I had found a pot of gold at the end of a rainbow. I immediately jumped at the chance to put my skills to good use doing something I am passionate about.

In the past, I have been a patient ambassador for Niemann Pick UK, an amazing charity that has worked with RARE before and who have supported me and been a part of my life for as long as I can remember. But despite attending too many NPUK conferences and events to count, I felt like I had not done enough. So, this is my chance to do more, not just for NPB patients, but for the rare disease community as a whole.

I'm here because I want to help you in any way I can. I know from firsthand experience the challenges that young people with rare disease face. I know how difficult the lack of awareness can be, especially for those of us with invisible illnesses.

I’ve been there when someone doesn’t quite understand, and their confusion leads to bullying or exclusion. I have been the kid who can’t do a certain activity or play a certain game for fear of getting hurt.

So, whatever, you might need me for, I will do my absolute best.

Seeing the absolutely amazing, phenomenal, incredible work that has been done already, and reading some of your truly inspirational stories, has filled me with hope and excitement. I can’t wait to get my teeth in and become a part of this truly remarkable group of people.

To find out more about me, you can read about my condition here:

Or you can watch this handy video

And please don't hesitate to get in touch. If you need me, you can reach me by email:


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