Getting started with Galafold
This video will introduce you to Galafold, including how to take it and how to fit it into your routine. It also outlines everything you will find in your Galafold Starter Pack.
If you have any further questions about Galafold, please talk to your healthcare professional.
Galafold Starter Pack
The Galafold Starter Pack is part of a personal support programme specifically designed for people with Fabry disease who have been prescribed Galafold.
The materials provided include an introductory letter, a SIDE by SIDE with GALAFOLD booklet, which contains information on Galafold and Fabry disease, a Fabry symptom tracker, a reminder magnet and the MyDay App.
Please talk to the healthcare professional who prescribed Galafold for you to receive more information about the welcome pack.
MyDay App (part of the welcome pack)
The MyDay App is designed to help you to establish a routine for taking your Galafold capsule.
The MyDay App is part of the welcome pack programme and free to download on the Apple® App store and Google® Play store.
To start using the app, you’ll need the access code from within the MyDay App leaflet.
MyDay App Leaflet
Download this leaflet to learn about the features of the MyDay App and how to use it.
It also contains an access code which you will need to start using it.
Pain in Fabry
Download this factsheet to provide you with information on the pain that may be associated with Fabry disease. The factsheet looks at the effects of Fabry pain, frequent locations of the pain and potential management approaches.
Women and Fabry
Download this factsheet to learn more about the unique challenges that may be faced by women who live with Fabry disease.
Fabry disease and Hearing Loss
This leaflet covers the way in which hearing may be affected in people with Fabry disease, with information about ways you can manage hearing loss.
A visual guide to Fabry disease
Download this factsheet to learn more about Fabry disease, including what causes Fabry disease and how Fabry disease could affect you.
MPS Society
The Society for Mucopolysaccharide Diseases (MPS Society) have a support and advocacy team for those living with Fabry who can provide advice and information on a range of topics including education, housing adaptations and benefits, as well as signposting you to help and support in your area.
Metabolic Support UK
Metabolic Support UK offers a range of services to patients and their families, including providing practical advice and information, arranging events and connecting families with shared experiences.
Glossary
