MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
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 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.
Hunter Outcome Survey Patient Report 2023
Read the 2023 annual update of the Hunter Outcome Survey (HOS), a large disease registry which has facilitated the collection of data on the signs symptoms and progression of MPS II.
Recent ENT publication: Hyo-Mental Angle and Distance
Hyo-Mental Angle and Distance: An Important Adjunct in Airway Assessment of Adult Mucopolysaccharidosis This research was conducted by...
Recent publication: MPS and the Ear, Nose and Throat (ENT) Specialist
You can view the recent publication ‘Mucopolysaccharidosis and the ENT Specialist’ online here. The article, written by Chaitanya...
Understanding MPS II Hunter disease
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS II Hunter disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Be prepared: emergency information for admission to hospital
Emergency information for admission to hospital that you should have to hand.
Covid
Please find below some updated information from our adult clinical centres. The clinical centres are working tirelessly to manage the...
Gene therapy for MPS
The American Society of Gene & Cell Therapy (ASGCT) have developed a series of patient-friendly resources to educate on gene therapy...
Respiratory complications and interventions/ventilation/tracheostomy in adult MPS by Mr C. Gadepalli
MPS National Conference 2019 Respiratory complications and interventions/ ventilation / tracheostomy in adult MPS by Mr C. Gadepalli MD,...
Transferring from paediatrics to adult services nurses prospective by Jane Roberts and Stuart Hulme
MPS National Conference 2019 Transferring from paediatrics to adult services nurses prospective by Jane Roberts MPS II /VIand Stuart...
Gene Therapy for MPS by Derralynn Hughes
MPS National Conference 2019 Gene Therapy for MPS by Derralynn Hughes Lysosomal Storage Disorders Unit, Royal Free London NHS Foundation...
Portacaths - To Port or Not to Port by Dr Fiona Stewart
MPS National Conference 2019 Portacaths - To Port or Not to Port by Dr Fiona Stewart Consultant in Medical Genetics, Clinical Genetics at...
Managing difficult behaviour
MPS National Conference 2019 Managing difficult behaviour by Daniella Vandepeer Mum to Caleb MPS II Hunter Syndrome
Gene therapy; where are we up to, what's currently happening
MPS National Conference 2019 Gene Therapy; where are we up to, what's currently happening by Julian Raiman Dr Julian Raiman at Birmingham...