See all the latest news, blogs and updates from the medical sector.
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.
06/02/2024
Blog
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.
22/01/2024
Blog
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.
14/12/2023
Blog
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!
04/12/2023
Blog
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.
03/12/2023
Condition
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.
27/11/2023
Blog
Sally's story | The Big Give Christmas Challenge 2023
Meet Sally, one of our Senior Advocacy & Support Officers. She has facilitated and joined many community events and treasures the time spent together and being able to connect face to face with our members.
21/11/2023
Blog
Today is World Sanfilippo Awareness Day
MPS III, known as Sanfilippo disease, is one of the mucopolysaccharide storage diseases.From 2010 to 2020, 83 babies were born with MPS III in the UK.
16/11/2023
Blog
Emma's story | The Big Give Christmas Challenge 2023
Hello, everyone! I am Emma, mum to my wonderful daughter Isabella. Isabella has MPS I Hurler and we have been members of the MPS Society since 2016.
