MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
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 - 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 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...
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 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...
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...
Fabry International Network Newsletter - December 2020
The latest newsletter from the Fabry International Network (FIN) is now available. A word from the President Dear All The last newsletter...
Fabry Findings - Issue No. 4 - Autumn 2020
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
Focus on Fabry: Fabry treatment update webinar
This webinar for Fabry patients and their families provides information about available interventional studies, who is eligible for them.
Fabry International Network Newsletter - June 2020
The latest newsletter from the Fabry International Network (FIN).
Focus on Fabry: living with Fabry and coronavirus
First Fabry patient webinar focussing on Fabry and coronavirus is today at 4pm.
Katrina's video - Fabry Awareness Month
Takeda have produced a film for Fabry awareness month this April highlighting what it is like to live with Fabry.
Simon's video - Fabry Awareness Month
In this video Simon discusses what life was like before he received a diagnosis and how it now affects him and his family.
Disability Living Allowance and Personal Independence Payments
Advice on managing the transition between Disability Living Allowance (DLA) and Personal Independence Payments (PIP) for people with Fabry.
Farber Disease Factsheet
This factsheet provides information about Farber disease, a rare, progressive disease caused by a deficiency (reduced function) of an enzyme called acid ceramidase.