See all the latest news, blogs and updates from the medical sector.
News
Neglected diseases - letter to The Times
Heads of more than 35 charities have written to The Times to ask NICE that rare diseases get fair and equal access to treatment.
02/03/2020
Condition
Vimizim re-evaluation process suspended - NICE's statement and MPS Society's response
NICE have today (28 February 2020) released the following statement in regards to the re-evaluation of Vimizim under the terms of the MAA.
28/02/2020
Blog
A brief history of the MAA
This year, 2020, will bring many NICE things. In memory of the foresight of the founder of the MPS Society, Christine Lavery, we would...
26/02/2020
Blog
An interview with Louise Emerson - Specialist Speech and Language Therapist at GOSH
We asked Louise if she would answer a few questions about her work with us and our members How long have you been working at Great Ormond...
19/02/2020
Blog
An interview with Michelle Wood -Â Metabolic Physiotherapist at Great Ormond Street Hospital
We asked Michelle if she would answer a few questions about her work with us and our members. In a sentence what is your job role? I am a...
19/02/2020
News
January e-news 2020
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18/02/2020
Story
Myles shares his experience travelling to the land down under
Myles who has MPS I writes Travel about his experience travelling with an MPS condition and offers some helpful tips and advice. Why...
14/01/2020
Story
Naomi's story
My name is Naomi, I am 20 years old and I have Fabry disease, which I was diagnosed with when I was 10.
04/12/2019
Story
Oliver's story
I was diagnosed with MPS VI in 1999 when I was just 4 years old. At this time there was no cure or treatment to help slow down the progression of the disease but with research largely funded by the MPS Society a treatment was developed.
04/12/2019
Story
Joanne's story
Joanne was diagnosed with MPS IV Morquio when she was 3. She is now 26 and the intervening years have been a roller-coaster of emotions and experiences.
