MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
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.
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...
MPS IVA Morquio 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...
Aisha’s top tips for overcoming all fears when transitioning to higher education
My name is Aisha and I did a B.A (Hons) Health Studies at De Montfort University and graduated in 2019. I have a rare genetic condition...
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,...
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...
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...