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Latest

See all the latest news, blogs and updates from the medical sector.

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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

A family stand in front of the I heart Drayton Manor sign which is pink, blue, yellow and purple.

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

A stethoscope icon in a green circle on a blue background with yellow hexagon shapes at the edge of the image.

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