See all the latest news, blogs and updates from the medical sector.
News
Together we can transform lives
Thank you to our amazing fundraisers for the support you have shown us over the past month, let's celebrate your achievements.
03/07/2023
Story
Robert's story - A father's love
During MPS Awareness Week this year we heard from Robert and how he chased a diagnosis for his son Nathan. In the second installment of...
18/06/2023
Condition
Gene therapy clinical trial for patients with MPS II Hunter opens in Manchester
A new gene therapy clinical trial for patients with MPS II Hunter disease is opening in Manchester.
16/06/2023
Condition
NICE unfortunately leans towards a ‘no’ for the treatment of early onset LAL D (Wolman disease)
NICE (National Institute of Clinical Excellence), the drug decision making body, have publicly released their interim decision today not...
05/06/2023
Story
Robert's story - MPS Awareness Week 2023
For MPS Awareness Week, we are looking at chasing the signs of MPS and raising awareness of the disease. Read Nathan's story.
15/05/2023
Blog
Navigating the NHS by Claire
I may seem a little obsessed, maybe I am, but when you are fighting for your life, for your health, you’ll leave no stone unturned.
29/03/2023
Story
Living with Fabry
This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease.
29/03/2023
Story
My personal journey of living rare by Claire
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.
29/03/2023
Blog
They had an absolute ball
It was dancing shoes at the ready for the Winter Ball, hosted by the Scott family, on 3rd February, all in honour of their daughter...
23/03/2023
Blog
We hear from Judith Evans
All good things come to an end…so the saying goes…..and earlier this year James Garthwaite told the Board that he wished to stand down...
