MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
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.
Leigh Day: Mental capacity and decision making
Amy Chater from Leigh Day Solicitors talks about the Mental Capacity Act 2005 which was designed to protect and restore power to vulnerable people who lack the capacity to make certain decisions due to illness or disability.
Beginning of a rare life
Dr Fiona Stewart welcomes a parent panel to share some of their real-life experiences and impressions of attending an MPS community weekend for the first time.
Update on therapy
Dr Alex Broomfield, experienced consultant in paediatric inherited metabolic conditions, shares an update on the types of therapy currently available.
Research update for MPS conditions - gene therapies
Prof Simon Jones from Dr Mary's Hospital in Manchester talks about research updates for MPS conditions with a particular focus on gene therapies.
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.
Role of biomarkers in advancing access to treatments for individuals with neurocognitive or neuronopathic MPS conditions
Summary report of the 2025 expert meeting on the role of biomarkers hosted by the MPS Society with the IMPSN. Children with MPS don’t have time to waste, with smarter science and faster action, we can give them the chance they deserve.
A guide on palliative and supportive care
Palliative care is a caregiving approach aimed at optimising quality of life and reducing suffering for people with chronic and often terminal illnesses.
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.
Supporting you through bereavement
Losing a loved one is an incredibly difficult experience and we understand how deeply it affects you, your family and your community. During this challenging time, we are here to listen, support and guide you through your grief.
Impact Report 2024
From a ground-breaking Fabry Matters conference, to broadening our event schedule, expanding support service and crucial work with clinical teams and partnerships, 2024 has been another step towards changing the world of rare diseases.
Evolving mental health needs in lysosomal storage disease communities | Findings from the UK LSD Collaborative surveys
This project shares insights on the evolving mental health challenges faced by individuals with lysosomal storage conditions through surveys conducted by the LSD Collaborative in the UK.
Transition in lysosomal storage diseases | Results of a UK patient and carer survey
The aim of this project was to understand patient experiences of transitioning from paediatric to adult services and to capture recommendations on what the service should consider going forward.
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.