MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Living with Fabry disease - David Moreno-Martinez
Dr Moreno-Martinez talks about living with Fabry disease and what it means to navigate a rare genetic condition at Fabry Matters Conference 2024.
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.
My Fabry treatment: a guide to empower and inform Fabry patients on their treatment journey
This guide is for patients with Fabry disease. It explains the structure of care you may receive at your specialist centre.
Lysosomal acid lipase deficiency (LAL D) - information for individuals, parents and families
Find more information about Lysosomal acid lipase deficiency (LAL D), a rare genetic disease.
BBC documentary highlights the importance of Newborn Screening for early diagnosis
BBC documentary highlights the importance of Newborn Screening for early diagnosis.
How physiotherapy can help with the physical symptoms of MPS III Sanfilippo
This guide explains the importance of physiotherapy for people with MPS III, how it helps and different interventions that can be used.
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.
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 I Scheie 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...
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...
MPS VI Maroteaux-Lamy 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...
MPS VII Sly 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...
MPS I Hurler-Scheie 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...
MPS I Hurler 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...
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...
Understanding Fabry 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...
Understanding Fabry disease - information for 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...
Understanding MPS I Hurler, Hurler-Scheie and Scheie 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...
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...
Fabry Findings - Issue No. 5 - Autumn 2021
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
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...
MPS I Webinar: Clinical trial and treatment update
Our first MPS I webinar specifically on new treatments brought together clinical experts to answer your questions about clinical trials...
Focus on Fabry webinar: Gene therapy updates
This webinar brought together clinical experts to answer your questions about gene therapy updates and how they may affect Fabry...