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Latest

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

News Blog Your story Conditions All

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.

SMC do not recommend pegunigalsidase alfa (Elfabrio®) for adult Fabry patients

SMC do not recommend pegunigalsidase alfa (Elfabrio®) for adult Fabry patients.

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

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).

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.

Together we can transform lives

Read our latest Fundraising Round Up and your inspirational stories that enable us to support over 1,750 people every year.

Together we can transform lives

Read the inspirational stories of some of our amazing fundraisers and be introduced to the first of our eight TCS London Marathon runners.

NICE approves its first ERT for treating Fabry disease

Pegunigalsidase alfa (Elfabrio®) has been recommended as an option by NICE for treating adults with Fabry in England and Wales.

Bob's rare disease road trip

Bob has been very busy over the last few weeks, as he travelled across the world to continue the all important conversation on rare diseases

Going on holiday in an MPS world

Living with MPS, Fabry or related condition can make going on holiday a daunting prospect. I am here to tell you that it's possible.

Together we can transform lives

Read all about our incredible fundraisers, from marathon runners to mountain climbers and learn how you too can get involved.

Thank you Katie and Churchill Park Academy

We would like to say a big thank you to Katie Mackelden who, along with Churchill Park Academy, raised £737.00 during MPS Awareness Week....

Together we can transform lives

Thank you to our amazing fundraisers for the support you have shown us over the past month, let's celebrate your achievements.