Resources
We have assembled a range of resources which you can use to find out more about Fabry disease and the patient experience.
Resources for patients
MPS Society
External organisation
The Society for Mucopolysaccharide Diseases (MPS Society) have a support and advocacy team for those living with MPS, Fabry and related lysosomal disorders. They can provide advice and information on a range of topics including education, housing adaptations and benefits, as well as signposting patients to help and support in their area.
Metabolic Support UK
External organisation
Metabolic Support UK are the leading patient organisation for people living with Inherited Metabolic Disorders (IMDs) and their communities, supporting thousands of patients worldwide, providing individual support, building patient communities, and continually advocating for and empowering those living with IMDs.
Pain in Fabry
Amicus Therapeutics produced material
This factsheet is intended to provide patients with information on the pain that may be associated with Fabry disease. It looks at the effects of Fabry pain, frequent locations of the pain and potential management approaches.
Women and Fabry
Amicus Therapeutics produced material
This factsheet covers the unique challenges that may be faced by women who live with Fabry disease.
Fabry disease and hearing loss
Amicus Therapeutics produced material
This leaflet covers the way in which hearing may be affected in patients with Fabry disease, with information about management options..
Resources for healthcare professionals
Fabry in females
Amicus Therapeutics produced material
This leaflet outlines the physical and psychosocial impact of Fabry disease on females, and proposes strategies for its improved diagnosis and management in these patients.
Rare and There
Amicus Therapeutics produced podcast
This podcast series explores the challenges of identifying and managing patients with rare genetic conditions, focusing on Fabry disease. Clinical experts share their practical experience and patient perspectives to help bring Fabry disease onto the radar of healthcare professionals.
Videos
The renal impact of Fabry disease
This short video provides an overview of the renal impact of Fabry disease, including how podocytes are affected by lysosomal substrate accumulation.
NP-NN-UK-00090622
July 2022
