MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Let's talk about AM with schools: guide for parents and caregivers
Preparing for school meetings and ensuring support for children and young people with alpha-mannosidosis.
Alpha-mannosidosis diary
A resource for people living with alpha-mannosidosis and their caregivers to keep track of the medical and life journey.
Let's talk about AM for schools and education settings
A brief overview for schools, educational settings, and their teachers on how to support the learning and wellbeing of children or young people with AM.
Let's talk about AM for healthcare professionals
A quick reference guide for healthcare professionals who are not familiar with alpha-mannosidosis. You can share this leaflet with the healthcare professional involved in your care, and bring it to the appointment to help explain AM.
Understanding alpha-mannosidosis
A guide for parents and caregivers that aims to answer some of the questions you might have, and to provide information about the disease.
Let's talk about AM with your healthcare team
Prepare for appointments with healthcare professionals who may not regularly see patients with AM.
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.
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.
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.
Update on therapy
Dr Alex Broomfield, experienced consultant in paediatric inherited metabolic conditions, shares an update on the types of therapy currently available.
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.