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.
White paper on improved outcomes for children with MLD following gene therapy
Recently published white paper on the improved outcomes for children with MLD following gene therapy based on findings from a parent survey.
MPS National Conference 2019 Interviews
We met with Louis Garthwaite and Daniella Vandepeer who shared their experiences with attending conference as MPS families. Jean Mercer...