Welcome...

The International Center for Fabry Disease has designed a web-based tutorial as a resource for patients with Fabry Disease, their family members and other interested individuals. The purpose of this tutorial is to help people learn more about Fabry Disease. We are currently conducting a research study (GCO# 03-1256, Evaluation of a Web-based Multi-media Tutorial for Fabry Disease) in order to determine the usefulness of this tutorial. A code is required for participation in the research study. If you received a code in the mail but cannot locate it, or if you are interested in participating in the study and have not yet received a code, please call Sherry Boyar at (212) 659-6741.

This tutorial was designed to help people understand Fabry disease, especially the genetics, symptoms, and treatment. This tutorial is not meant to take the place of personalized medical advice or to dictate treatment decisions for those affected by Fabry disease. All males with Fabry disease and female carriers (symptomatic and asymptomatic) should be followed by a team of health care professionals specializing in the care of patients with Fabry disease.

There are 4 sections to this research study: (1) an intake form in which we ask you questions about yourself and your knowledge of Fabry disease; (2) a pre-test; (3) the tutorial; and (4) a post-test/evaluation. Please complete all four sections so that we can learn if this tutorial is an effective way to teach people about Fabry disease. None of your information will be received until you click the “submit” button at the end of the post-test/evaluation section.

We will not be collecting any personal identification information that can be used to identify you. The computer program will unlink your responses from your entry code. Further, all responses will be kept confidential. We appreciate your time. Thank you.


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