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.
Impact Report 2025
Better peer support, specialist emotional support, improved support events, return of the conference, research, patients at the centre - impact that was made possible thanks to our amazing fundraisers.
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.
Beyond the patient: longitudinal insights into psychological wellbeing and caregiver burden in Lysosomal Storage Diseases
Poster presentation at WORLDSymposium 2026 about the mental health burden on carers living with a family member with a rare disease.
Co-producing UK clinical guidelines for Lysosomal Storage Disorders
Poster presentation at WORLDSymposium 2026 about the clinical guidelines for Lysosomal Storage Disorders created by the PPPN.
Bake for rare fundraising pack
Everything you need to hold your own bake for rare event.
CSAC Open Day 2026
Catch up on the 2026 CSAC Open Day when Dr Fiona Stewart and Prof Derralynn Hughes were in conversation with researchers to discover the stories projects funded by CSAC.
Arabella's guide to hospital stays
Based on her own experience, MPS Society member Emily shares a list of items to include on your packing list and thoughtful tips to make your hospital stay more comfortable and less stressful.
MPS Matters 2025: insights and impact
This report highlights the impact of the MPS Matters community weekend 2025 and presents the results of the various data collections carried out.
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.
MPS Matters 2025: summary of expert meeting
The MPS Matters expert meeting, held on the opening day of the 2025 MPS Society conference, was convened in response to ongoing concerns and challenges in key clinical areas. This is a summary of the discussions that took place in the meeting.
Childhood dementia: Global advocacy and research
Gail Hilton, Head of Programs at the Childhood Dementia Initiative in Australia, has dedicated the past six years to childhood dementia research and advocacy.
Finding my strength: An independent infusion journey
Yvette shares her personal infusion journey, from being a needle-phobic to administering infusions for her daughter Gracie when the Covid-19 pandemic struck.
IPSEA: Getting the right educational support
IPSEA help children and young people with special educational needs and disabilities (SEND) get the education they are entitled to by law in England. At MPS Matters 2025 they provided a compact overview of SEND law.