MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Nutrition - Dr Seema Kanwal
Dr Seema Kanwal discusses best nutrition practices, possible symptoms of GI problems and options for their management.
Talking to your teens, transition matters - Uma Ramaswami
Uma Ramaswami talks about the transition process of adolescents and young adults with Fabry from child-centred to adult-orientated health care systems.
Living with Fabry disease - David Moreno-Martinez
Dr Moreno-Martinez talks about living with Fabry disease and what it means to navigate a rare genetic condition at Fabry Matters Conference 2024.
A guide to understanding anaesthetic management
Read our guide to understanding anaesthetic management which concentrates on the procedures involved in having a general anaesthetic and special considerations for individuals with MPS or related diseases.
Hunter Outcome Survey Patient Report 2023
Read the 2023 annual update of the Hunter Outcome Survey (HOS), a large disease registry which has facilitated the collection of data on the signs symptoms and progression of MPS II.
How we can support you
This leaflet describes the services and support we offer you.
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 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...