MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Living well with Fabry: a shared decision-making toolkit
This toolkit has been developed in collaboration with people living with Fabry and Fabry specialists and can help you talk about some of the symptoms that people have told us impact them the most.
Family communication - Alison Wilson
Alison Wilson, Senior Support & Advocacy Officer at the MPS Society, explains how Fabry is inherited and highlights why family communication matters.
Nutrition - Dr Seema Kanwal
Dr Seema Kanwal discusses best nutrition practices, possible symptoms of GI problems and options for their management.
Talking to your teens, transition matters - Uma Ramaswami
Uma Ramaswami talks about the transition process of adolescents and young adults with Fabry from child-centred to adult-orientated health care systems.
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.
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.
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...
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.
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.