See all the latest news, blogs and updates from the medical sector.
Condition
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.
26/06/2024
Blog
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.
08/05/2024
Blog
Rareminds' counsellors | MPS Awareness Week 2024
The specialist Rareminds counsellors explain the part they play in supporting people living with a rare disease.
01/05/2024
Blog
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.
18/04/2024
News
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.
09/04/2024
News
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.
03/04/2024
News
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.
27/02/2024
News
Step into Spring is back!
Join us on Facebook where we are challenging you to complete 10,000 steps a day this March, and we will be walking right beside you. Register now!
08/02/2024
News
Highlights from the team at WORLD 2024
Sophie, Bob and Fiona, part of Team MPS attending WORLDSymposium, shared their news and what they have been up to. With plenty of meetings and presentations to attend there are lots of opportunities to expand our knowledge of lysosomal diseases.
07/02/2024
Condition
Study to create a physical activity intervention for adults with Fabry disease
Get involved in a research study to help people with Fabry disease get more active and improve their mental health and quality of life.
