See all the latest news, blogs and updates from the medical sector.
Story
My daughter Eva
For Leukodystrophy Awareness Month we hear from Catrin, whose daughter has Metachromatic Leukodystrophy (MLD). My daughter Eva Rae...
18/09/2023
Story
My son Joey
For Leukodystrophy Awareness Month we hear from Katie, whose son has Metachromatic Leukodystrophy (MLD). Joey was born a happy healthy...
11/09/2023
Condition
NICE approves its first ERT for treating Fabry disease
Pegunigalsidase alfa (Elfabrio®) has been recommended as an option by NICE for treating adults with Fabry in England and Wales.
01/09/2023
Blog
Bob's rare disease road trip
Bob has been very busy over the last few weeks, as he travelled across the world to continue the all important conversation on rare diseases
23/08/2023
Blog
Going on holiday in an MPS world
Living with MPS, Fabry or related condition can make going on holiday a daunting prospect. I am here to tell you that it's possible.
01/08/2023
News
Together we can transform lives
Read all about our incredible fundraisers, from marathon runners to mountain climbers and learn how you too can get involved.
27/07/2023
Blog
Thank you Katie and Churchill Park Academy
We would like to say a big thank you to Katie Mackelden who, along with Churchill Park Academy, raised £737.00 during MPS Awareness Week....
04/07/2023
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.
