MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
CSAC open day webinar - 10 October 2023
CSAC webinar chaired Dr Fiona Stewart explains how CSAC play an integral role in helping our rare disease community.
My Fabry treatment: a guide to empower and inform Fabry patients on their treatment journey
This guide is for patients with Fabry disease. It explains the structure of care you may receive at your specialist centre.
Lysosomal acid lipase deficiency (LAL D) - information for individuals, parents and families
Find more information about Lysosomal acid lipase deficiency (LAL D), a rare genetic disease.
MPS Society Strategy 2023-2026
We have launched our new strategy which focuses on the support of mental health and wellbeing whilst continuing to put our members first.
Impact report 2022
Read about the impact the MPS Society made in 2022. Here to transform the lives of those with MPS, Fabry and related lysosomal diseases.
BBC documentary highlights the importance of Newborn Screening for early diagnosis
BBC documentary highlights the importance of Newborn Screening for early diagnosis.
How physiotherapy can help with the physical symptoms of MPS III Sanfilippo
This guide explains the importance of physiotherapy for people with MPS III, how it helps and different interventions that can be used.
Celebrating 40 years
This year has been momentous, as we celebrated a massive milestone, reaching 40 years of being a rare disease charity. Read our highlights.
White paper on improved outcomes for children with MLD following gene therapy
Recently published white paper on the improved outcomes for children with MLD following gene therapy based on findings from a parent survey.
Recent ENT publication: Hyo-Mental Angle and Distance
Hyo-Mental Angle and Distance: An Important Adjunct in Airway Assessment of Adult Mucopolysaccharidosis This research was conducted by...
Recent publication: MPS and the Ear, Nose and Throat (ENT) Specialist
You can view the recent publication ‘Mucopolysaccharidosis and the ENT Specialist’ online here. The article, written by Chaitanya...
MPS VII Sly disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS I Scheie disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS IVA Morquio disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS VI Maroteaux-Lamy disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Impact Report 2020/21
As part of moving our resources online, we are starting to upload our magazines. Below is the issue from 2020/21. Please click to download.
MPS I Hurler-Scheie disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS I Hurler disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...