See all the latest news, blogs and updates from the medical sector.
CSAC Update July 2024
Hear from our trustee, Dr Fiona Stewart, as she reflects on the past six months of CSAC achievements and looks ahead to an exciting autumn.
Update for patients with late onset LAL D (Lysosomal acid lipase deficiency)
Despite best efforts, NICE was unable to make a recommendation for the use of sebelipase alfa in LAL-D patients with non-Wolman disease.
Of course I love to score goals!
Hear from Tyler who, after a bilateral hip replacement, is fully embracing his passion for football. He shares how sheer determination to achieve his goals rewarded him places in the Danby Rovers and Mencap England football teams.
Helen's story | MPS Awareness Week 2024
Helen's preconceived notions of a wellbeing course were shattered once she tried it. The course helped Helen identify positive aspects of her life and recognise the barriers preventing access to that positivity.
Rareminds' counsellors | MPS Awareness Week 2024
The specialist Rareminds counsellors explain the part they play in supporting people living with a rare disease.
Together we can transform lives
We've had some amazing fundraisers taking on a whole array of challenges from head shaves to overseas marathons. It has been great to see so many of you getting your fundraising hats on, read you stories.
First prize for the rapid assessment of lysosomal enzyme activity in dried blood spots
CSAC member Simon Heales shares some background on a recent research project of the rapid assessment of lysosomal enzyme activity in dried blood spots which received a research grant from the MPS Society.
17th International Symposium on MPS and related diseases
We will be at the 17th International MPS Symposium this week and alongside the exciting programme on offer we will be participating in expert meetings on behalf of our community.
Shining a light on the importance of individualised airway management plans
For Rare Disease Day, we shine the light on an important safety investigation report that involved insights from the MPS Society.
Sam just does "normal stuff"
We recently caught up with Sam to reflect on our first Adult Social Weekend in Manchester and covered even more important topics such as TV’s Taskmaster, Manchester United (his favourite football team), writing theatre plays and aerial acrobatics.