Digital tools
The Fabry App
A day-to-day companion app for people living with Fabry disease — built to help you track symptoms, learn about the condition, and get quick answers between appointments.
What it is
The Fabry App, from developer Synaptica Health, is a mobile app aimed at helping people manage the day-to-day reality of living with Fabry disease — from unpredictable pain and fatigue to keeping track of infusion schedules and medications. It's designed as a companion to your clinical care rather than a replacement for it.
The developers describe it as having been shaped by input from people living with Fabry disease, and say it's endorsed by patient advocacy groups including the Fabry Support & Information Group (FSIG) — a US-based Fabry patient organisation. It's a general, internationally-available app rather than an NHS or UK-specific tool, so some content may reflect a US healthcare context.
Key features
- Binder — daily tracking of symptoms such as pain and sleep, plus medication logging
- EDU — a library of short lessons and articles on Fabry-related topics
- Concierge — an in-app assistant that answers questions and can surface your own tracked data
- Medication and appointment reminders
- Community stories from other people with Fabry disease
Why it might help
-
Between-appointment tracking
Fabry symptoms can vary a lot from day to day. Logging pain, energy and sleep as they happen — rather than trying to recall them months later — can make conversations with your specialist team more concrete and useful.
-
Fabry-specific education
Rather than searching generally online, the app's education library is aimed specifically at Fabry disease topics, in short, digestible lessons.
-
Questions outside clinic hours
The in-app Concierge assistant is aimed at the kind of everyday questions that come up outside scheduled appointments — though it isn't a substitute for medical advice from your care team.
-
Data privacy
The developers state that entered health data is encrypted and not shared without consent. As with any health app, it's worth reading the app's own privacy policy before entering personal or medical information.
An independent app, not a clinical tool. The Fabry App isn't provided by the NHS and isn't a substitute for care from your specialist metabolic team. Its own disclaimer is clear that it's intended as an educational and self-tracking companion, not a source of diagnosis or treatment decisions. If you're experiencing urgent symptoms, contact your care team or emergency services rather than relying on the app.
You can find out more, including how to download it, at fabryapp.com.
Other tools worth knowing about
MyDay App
A symptom and treatment tracker offered alongside Galafold (migalastat) support materials, provided by the medicine's manufacturer, Amicus Therapeutics.
"My Fabry Treatment" guide (MPS Society)
A free downloadable PDF booklet from the MPS Society, covering your care team, treatment options, questions to ask your specialist, and printable pages for tracking symptoms and preparing for appointments.
Download the PDF →Paper symptom diaries
If an app isn't for you, most specialist centres can provide simple paper-based symptom diaries that work just as well for tracking patterns over time.
See Support Services for UK charities, and Treatment Centres for your specialist NHS team.