MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Fabry Education and Resilience Project 2025 Poster
This poster summarises the core findings from the Fabry Education and Resilience Project 2025 and demonstrates how delivering content via familiar networks promotes engagement, learning and resilience.
Alpha-mannosidosis virtual community meeting: summary report
This first international alpha-mannosidosis community meeting was created to bring people together and strengthen connections across countries. Here we summarise the discussions from the meeting.
Understanding alpha-mannosidosis
A guide for parents and caregivers that aims to answer questions and provide information about the disease.
Patient diary
A resource for people living with alpha-mannosidosis and their caregivers to keep track of their medical and life journey.
Alpha-mannosidosis information for healthcare professionals
Share this as a quick reference for healthcare professionals who are not familiar with alpha-mannosidosis.
Preparing for appointments with healthcare professionals
Prepare for appointments with healthcare professionals who may not regularly see patients with alpha-mannosidosis.
Alpha-mannosidosis information for schools
An overview for schools and their teachers on how to support the learning and wellbeing of young people with alpha-mannosidosis.
Information about going to school
Preparing for school meetings and ensuring support for children and young people with alpha-mannosidosis.
Transitioning to adult healthcare – coming soon!
This resource will be available soon.
Wellbeing resource – coming soon!
This resource will be available soon.
Fabry Matters Conference 2024: Insights preview
This publication previews the insights gathered during the Fabry Matters Conference in 2024 from Fabry patients and their caregivers through surveys and interactive post-it note boards, providing valuable perspectives on their experiences and needs.
Review: Fabry Education and Resilience Project 2025
Discover the core themes our Fabry community discussed throughout the Fabry Education and Resilience Project and access helpful resources to navigate life with Fabry.
Prevalence of intestinal disease as terminal event in Mucopolysaccharidosis Type Ill
It was noted that individuals with MPS Ill have a wide range of gastrointestinal (GI) conditions, this poster shows the findings from a multi-agency study into GI conditions and their prevalence.
The importance of clinical guidelines
Sophie Thomas from the MPS Society and James Davison, consultant in paediatric metabolic medicine at Great Ormond Street Hospital in London, explain the development and purpose of clinical guidelines at MPS Matters 2025.
Barriers and facilitators to clinical trial participation: Improving accessibility, logistics and awareness
This poster is based on survey data collected from delegates who attended the Fabry Matters Conference in 2024 and offers a platform for RDRP to share insights directly shaped by the patient community.
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.
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.
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.