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Patient Handbook

Patient Handbook

This printed resource can help you have productive doctor appointments and informative conversations with your care team, keep track of disease progression over time, record your test results, and understand how Fabry may impact you and your family. Keep it with you throughout your treatment and monitoring journey!

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Learn more about discussing Fabry disease with your care team

Fabry Doctor Dialogue Guide

Fabry Doctor Dialogue Guide

Download this resource to help start conversations with your Fabry care team. It can help you:

  • Understand the risks of disease progression
  • Set up your care team of core doctors and an extended team of specialists, who can help with more specific issues
  • Learn how to take the lead in controlling your health
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Symptom and disease tracking tools

Daily Fabry Symptom Tracker Checklist

Daily Fabry Symptom Tracker Checklist

This symptom tracker checklist can help you stay on top of your daily symptoms. It lists specific symptoms you may experience, organized by where they occur in your body. There's also a place to note any additional symptoms you may be experiencing.

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Annual Fabry Monitoring Guide

Annual Fabry Monitoring Guide

This tool will help you monitor your test results to help you and your care team stay on top of your disease progression.

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Watch now: Rethinking Fabry video series

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Rethinking Fabry: “Mild” Disease

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Rethinking Fabry: Curating Your Care Team

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Rethinking Fabry: Strategies for Staying Vigilant

Past Fabry disease webinars

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Growing Up and In to Fabry: Helpful Tips for a Successful Transition

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Women and Fabry: Strategies To Advocate For Your Daughter

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Living with Fabry: The Women's View

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Know Fabry, Know Surprises

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Understanding the Hidden Impact of Fabry Disease

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Fabry is Forever: Break Through the Silence

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Living with Fabry: A Holistic Approach

Rethinking Fabry Patient Stories: Get Inspired

NOW PLAYING WATCH

Rethink Fabry: Maurice, encouragement living with Fabry

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Rethink Fabry: Mandie, wife, mother, poet, artist living with Fabry

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Rethink Fabry: Lori, an inspiration living with Fabry

Fabry support and information groups

You are not alone

While at times it might feel lonely to have Fabry disease or to be a caregiver for someone with Fabry disease, many people understand what you're going through.

Organizations like the National Fabry Disease Foundation (NFDF) and the Fabry Support and Information Group (FSIG) can help you connect with other people with Fabry disease and caregivers through meetings, conferences, and other in-person and virtual events.

Other support organizations

The Fabry International Network (FIN)

National Organization for Rare Disorders (NORD)

You can also look for Fabry disease research and clinical trials at the US clinical trials registry site at www.clinicaltrials.gov. Search for “Fabry disease.”

STAY INFORMED ABOUT FABRY DISEASE