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Fabry Awareness Month

April is Fabry Awareness Month.

This year for Fabry Awareness Month our aim is to highlight what life is like living with Fabry disease and delve into a world that can often be hidden from society. So let's open up and start a conversation about Fabry disease.

​How to get involved

Read 'Your Stories' - Find out what life with Fabry disease is like direct from our Fabry community. We have a collection of stories from people living with Fabry disease as well as professionals who see Fabry disease every day. Gain a better understanding of how this disease affects those who live with it.

Claire's story

Claire O'Meara - Claire is one of our guest bloggers who talks candidly about her experiences of being diagnosed with Fabry and her journey of living with a rare disease. Claire recalls how she first felt when she first started getting symptoms saying, "32, young fun living life and boom hit by what I can only describe as a tidal wave of fatigue and body pain that came from nowhere.."

Jack's story

Jack Harris - Jack was diagnosed when he was 11 and was the youngest child to start treatment at about 18 months.

Jack says, "As I had always had treatment and all my siblings and mum had had treatment too I just thought it was normal."

Find out more about Jack's amazing story.

Derralynn's story

Derralynn Hughes - Derralynn is one of our new trustees. She is also a Professor of Experimental Haematology at University College London, Clinical Director of Research and Innovation at the Royal Free London NHS Foundation Trust, and Co-Clinical Director of the NCL Cancer Alliance. Derralynn is also Chair of the European Working Group on Gaucher Disease.

Donna's story

Donna Parker - Donna is our Fabry Support and Advocacy Officer at the MPS Society. Her background has mainly revolved around the healthcare sector, and she spent many years working in retail banking and customer service.

Prior to working for the MPS Society Donna worked as a Registered Nurse.

Get social, help raise awareness of life with Fabry disease by sharing these stories on your social channels.

Follow us on Facebook, Twitter and Instagram and share our #FabryAwareness posts. Let's get everyone talking about Fabry disease.

Useful links

About Fabry disease

Advocacy support

Get involved

Contact us

Our helpline is open 9-5pm

Monday-Friday: 0345 389 9901

Out of hours support line open 5pm-10pm Monday-Friday and weekends:

07712 653 258

Email us

Donna's Fabry support info

Read our Fabry disease booklet

Help us support those living with Fabry disease by making a donation to the charity. Our members face so many challenges because of their symptoms, we are here to make life as easy as possible so they can live life to their full potential.​

Donate

Fabry stories

Fabry Awareness Month stories

My personal journey of living rare by Claire

Living with Fabry

Navigating the NHS by Claire

Living with Fabry: Loretta's story - Fabry Awareness Month

Donna's story - Fabry Awareness Month

Living with Fabry: Naomi's story - Fabry Awareness Month

Derralynn's story - Fabry Awareness Month

Steven's story - Fabry Awareness Month

Could it be Fabry? A response

Could it be Fabry? A plea from the heart

Look into my eyes and ask, "could it be Fabry?"

Could it be Fabry? The beginning

Katrina's video - Fabry Awareness Month

Naomi tells us how she's not letting Fabry, or the lockdown, get in the way of future dreams

Simon's video - Fabry Awareness Month

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