Fabryfacts.com is intended for United States Healthcare Professionals Only. If you are person living with Fabry disease, visit the patient website at www.FabryConnect.com.

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Fabry Disease Resources

Use these resources to further your knowledge of Fabry disease and help your patients gain a better understanding of Fabry disease.

Resources for your practice

Disease awareness brochure

A guide to understanding Fabry disease, a rare lysosomal disease

Monitoring brochure

For recommended assessments and schedules for monitoring specific organs affected by Fabry

FABRY DISEASE DIAGNOSTIC CHECKLIST

Recognize the signs and symptoms of Fabry disease

Cardiologist Gastroenterologist Nephrologist Neurologist Paediatric Pain Medicine Rheumatologist

Fabry. A Unique disease—uniquely experienced

A disease background brochure for healthcare professionals

Fabry disease glossary

Defines key terms for healthcare professionals relating to diagnosing and managing Fabry disease

Multimedia resources

Understanding a Patient's History to Diagnose and Treat Fabry Disease

As with most rare diseases, Fabry disease is relatively unfamiliar to most physicians.  In a series of 3 educational videos, Geneticist and Fabry expert, Dr. Rob Hopkin, along with individuals living with Fabry disease discuss the unique nature of Fabry disease.  The first video in the series focuses on the importance of taking a good patient and family history and initiating a conversation with the patient to better understand his or her concerns and priorities.

Stay tuned for upcoming videos as part of this series

Learn How
Fabry Disease Develops

View now

Interactive Organ Map

Learn how Fabry disease can affect the organ systems.

Resources for your patients

family TREE tool

Help your patients and their families understand the importance of completing a family tree and highlighting at-risk relatives with this online tool

Pain in Fabry disease

The fact sheet outlines how and where people with Fabry might experience pain

A visual guide to understanding fabry disease

Informative infographic brochure to share with patients and their families

Understanding & managing gastrointestinal symptoms in Fabry DISEASE

Gastrointestinal symptoms are very common in people living with Fabry disease

Women and fabry disease

Learn about common effects of Fabry in women

TESTING FOR FABRY DISEASE MAY HELP YOU AND YOUR FAMILY

This brochure can help your patients understand how Fabry disease is inherited and the importance of genetic testing

HEARING LOSS AND FABRY DISEASE

Understand how hearing impairment may occur in Fabry disease, ways to identify it, and potential treatment and methods to manage it

FATIGUE AND FABRY DISEASE

Learn about the effects of fatigue in Fabry disease and potentials ways to manage it

LINKS

The Fabry International Network The Fabry International Network fabrynetwork.org
Fabry Support & Information Group Fabry Support & Information Group fabry.org
The National Fabry Disease Foundation The National Fabry Disease Foundation fabrydisease.org
The Society For Mucopolysaccharide Diseases (UK) The Society For Mucopolysaccharide Diseases (UK) mpssociety.org.uk
Canadian Fabry Association Canadian Fabry Association fabrycanada.com
Fabry Australia Fabry Australia fabry.com.au
National Institutes of Health NINDS Fabry Disease Information Page National Institutes of Health NINDS Fabry Disease Information Page ninds.nih.gov/disorders/fabrys
The National Organization for Rare Disorders The National Organization for Rare Disorders rarediseases.org
EURORDIS – Rare Diseases Europe EURORDIS – Rare Diseases Europe eurordis.org
Japan Fabry Disease Patients and Family Association (JFA) Japan Fabry Disease Patients and Family Association (JFA) FabryNet.jp