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Blog

May Fundraiser of the Month - Ethan Fanneran-Burley and family

For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have Katrina...

29/04/2022

Blog

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

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....

28/04/2022

Blog

Donna's story - Fabry Awareness Month

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....

21/04/2022

Blog

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

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....

14/04/2022

Blog

Derralynn's story - Fabry Awareness Month

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....

05/04/2022

Blog

April Fundraiser of the Month - Steven Gill

Steven Gill shares his connection to Fabry and why he's chosen to take on a huge fundraising challenge.

01/04/2022

Story

Steven's story - Fabry Awareness Month

This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....

31/03/2022

Condition

NICE approves life-changing medication for treating MPS IVA Morquio

Elosulfase alfa (Vimizim®) has been recommended by NICE for treating MPS IVA Morquio in people of all ages in England and Wales.

21/03/2022

Story

Living life with MPS IVA - Joanne's inspirational story

Joanne was diagnosed with MPS IVA Morquio when she was three years old and her mother Judith Evans, one of our lovely trustees opens up...

09/03/2022

Blog

March Fundraiser of the Month - The Hampden Arms

For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have The...

01/03/2022

Story

Why Amy is a unique lady

Amy Cooper, from Hampshire, is 35 years old and has MPS I Hurler. She is one of the few people who underwent a Bone Marrow Transplant at...

28/02/2022

Blog

Why Duncan is running a marathon a month in 2022

Discovering that a relative has been diagnosed with a rare disease can be a bit overwhelming and leave you feeling somewhat worried and...

16/02/2022