The National Fabry Disease Foundation (NFDF)

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Healthcare Management Tools for People with Fabry Disease

The NFDF is eager to provide tools to individuals with Fabry disease and their families to help manage their disease. Participatory management by individuals and their healthcare providers is very important to ensure the best care possible.

Individuals with Fabry disease should be active participants in their healthcare to ensure they receive timely evaluation and follow up of disease symptom occurrence and progression, timely receipt of the minimum recommended clinical assessments, and appropriate treatment in time to avoid a diminished quality of life or the life-threatening complications of the disease.

The tools that are available thus far are:

1. The recommended assessments guide designated by the Fabry Registry Board for individuals to use themselves and to share with their physicians who are unfamiliar with the recommended assessments.

2. Ten Tips for Communicating with Health Care Providers and Becoming a Partner in Your Care

Please provide suggestions for other tools or assistance the NFDF may be able to provide at Suggestions@fabrydisease.org .

Fabry Disease Symptoms Checklist

Fabry Disease Symptoms Journal

Assessment Journal

Fabry Family Assistance Program

The Web Site has moved to a new address - www.fabrydisease.org