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Women in RARE Next Gen: Nicole Martin

Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine

Nicole Martin

About you

Hi. My name is Nicole I have two rare medical conditions neurofibromatosis type 1 (NF1) and Ehlers-Danlos Syndrome type 3 (EDS3). I recently got a degree in design engineering and I'm a disabled model. I currently live with my boyfriend and dog Teagan in Manchester.

Your biggest motivation

My biggest motivation is supporting those with my condition and helping with showing that they can do whatever they want to do. As I know that when I was younger it very isolating not seeing or knowing anyone who had gone through similar experiences as me.

Your greatest achievement

Is moving away for university and living independently, I now live with my boyfriend and currently work in the airport and model part timethese are things I thought or was told I would never be able to do.

What's next to strive for?

Next is for the next advocates to fight to say what they want as young adults, as they are the drive that is needed for rare diseases. They need to be heard and listened to by medical professionals, education professionals and the government. I hope they can show and inspire the younger generation to be the next advocates.

Advice to up-and-coming advocates

To not be afraid of what you want to fight and advocate for, and most importantly to be yourself.

The tide will turn for the rare disease community when...

We no longer have to fight for medical help or for them to believe us when we say someone is wrong like pain or the wrong medication.



Instagram: @Nicole_j_martin


Read the Women in RARE edition at


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