Patient Reported Outcomes (Pros) Program

National Fabry Disease Foundation "Take Our Surveys" Contest

If you are 18 years or older and have the Fabry disease gene, even if you don't have symptoms, you can be a great help in our efforts to better understand Fabry disease and to the Fabry disease community in general. So many of you tell us you would like to help because you took years to get diagnosed, or because you have had major medical events that could have been prevented, or because you have lost loved ones at an early age, or for many other good reasons. This program is one of the many ways you can help others and make a difference.

Please help us to gather information to continue learning about Fabry disease and the Fabry community to support development of Fabry disease education and community support programs.

We plan to distribute a monthly survey for you to complete via our electronic newsletter service. If you complete the survey in the month it is issued, you'll be eligible to win up to $250.00 in the monthly prize drawing. The monthly prize amount is based on awarding $1.00 (one U.S. dollar) for every survey completed, so the more people who participate the greater the award. 

Separate monthly prizes of up to $250.00 will be awarded to the U.S. Fabry disease community and to the global (non-U.S.) Fabry community.

At the end of the year, we may have a separate U.S. and global year-end drawing for $500.00 (each) for everyone who has completed all of the surveys for the year. If you miss taking a monthly survey in the month it was distributed, you will still be eligible for the year-end drawing if you complete it after the month it was originally distributed as long as all surveys are completed by December 31st.

Our primary goal is to learn and share useful information, but we are using a contest format to increase participation and to add a little excitement to this very important initiative. We still have much to learn about Fabry disease. The monthly survey results will be shared with you and the greater Fabry community. We hope to have a very large number of participants (hundreds) so the results will be a good representation of the overall Fabry community and will be more useful to us all.

Please share the newsletters and survey links with any of your family members who have the Fabry gene. We will not share your personal information except your first name only and location such as state, province or county, and country.

You must subscribe to our monthly newsletter to participate. Your subscription enables us to contact you to verify your status as someone with the Fabry gene if necessary, to clarify your survey answers if necessary, to contact you if you win the prize drawing, and to distribute the monthly survey links to you. 

If you cannot accept the prize because of income limitations (because you receive social security disability payments or for any other reason), please still take the survey to improve the information collected; just let us know you cannot accept the prize. 

If you have any questions or comments, or need assistance please contact Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it.,  800-651-9131 (U.S. toll-free) or 919-932-7785 (local number).

Thank you for your support and good luck!