See all the latest news, blogs and updates from the medical sector.
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.
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!
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.
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.
Together we can transform lives
Read more about our fantastic fundraisers, who over the last weeks, have given their all to raise vital funds to help us support people and families living with rare diseases.
Conclusion of an epic challenge
After 12 months, Steven Gill completes his heroic effort of challenging himself across 59 events to raise funds for the MPS Society.
Hear the latest from CSAC
Our trustee Dr Fiona Stewart reflects on the projects and achievements carried out by our Clinical Scientific Advisory Committee (CSAC) during the past year and shares their plans for 2024.
The impact you'll make | The Big Give Christmas Challenge 2023
Thank you so much for smashing our target of £24,000 for the Big Give Christmas Challenge!
Oke's story | The Big Give Christmas Challenge 2023
For the first time this year, we organised an Independent Adult Social Weekend at a hotel in Manchester as part of the community events we offer to our members.
NICE approves life-saving treatment for children with infantile lysosomal acid lipase deficiency
The MPS Society is delighted to announce that sebelipase alfa (Kanuma®) has been recommended by NICE as an option for long-term enzyme replacement therapy for people with infantile lysosomal acid lipase deficiency.