MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
History of research
The MPS Society has funded research into treatments, and one day a cure, for MPS and related diseases since 1982. Take a look back at those many and varied research projects that have been funded thanks to the support of our fundraisers and donors.
Diagnosis and treatment of individuals with MPS II Hunter in the United Kingdom
This poster shares the findings of a research project that looked at the diagnosis and treatment of individuals with MPS II Hunter in the UK.
The educational journey of individuals with MPS IVA Morquio Disease
This poster shares the findings of a research project that looked into the educational and employment history of individuals with MPS IVA Morquio.
The educational journey of individuals with MPS II Hunter Disease in the United Kingdom
This poster shares the findings of a research project that looked at the cognitive variability in patients with MPS II to understand their needs and support requirements in an educational setting.
CSAC open day 2024
Fiona, Chair of CSAC, presents a collection of talks from researchers who have received funding from the Committee. This is possible thanks to the fundraising and donations of our supporters and the profits from RDRP each year to the MPS Society.
Living well with Fabry: a shared decision-making toolkit
This toolkit has been developed in collaboration with people living with Fabry and Fabry specialists and can help you talk about some of the symptoms that people have told us impact them the most.
Impact Report 2023
A full events schedule, several highly-specialised treatments approved, the launch of the support hub, 2023 has been a busy year and we think we've made a big difference. Read all about our impact in 2023.
MPS III Sanfilippo - information for individuals, parents and families
We know that being diagnosed with a rare condition is life-changing and you can struggle to come to terms with it.
Family communication - Alison Wilson
Alison Wilson, Senior Support & Advocacy Officer at the MPS Society, explains how Fabry is inherited and highlights why family communication matters.
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.