See all the latest news, blogs and updates from the medical sector.
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.
14/11/2023
Condition
SMC do not recommend pegunigalsidase alfa (Elfabrio®) for adult Fabry patients
SMC do not recommend pegunigalsidase alfa (Elfabrio®) for adult Fabry patients.
13/11/2023
Condition
NICE approves life-changing medication for treatment of alpha mannosidosis
NICE have recommended velmanase alfa as an option for treating alpha mannosidosis, if treatment is started in people under 18 years (it can be continued in people who turn 18 while on treatment).
10/11/2023
Blog
Angela's story | The Big Give Christmas Challenge 2023
Angela's story shines a light on the lasting friendships and strong support networks created through finding a place of acceptance and empathy.
06/11/2023
News
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