We learn from the PROS (professionals) - individuals with Fabry disease
The National Fabry Disease Foundation conducts periodic online surveys to learn from people with Fabry disease. The information learned in the surveys is very useful to:
- Provide questions for patients to ask their doctors based on information reported by other patients.
- Provide insights about future research needs. We discover information about patients' symptoms and experiences that have not yet risen to the level of formal research.
- Learn about the needs of the Fabry community to evaluate and improve the programs and services we provide.
- Learn what the Fabry community thinks about important issues so we can provide informed community input when decisions are being made in the medical community or by the government that affect us.
In 2014, we published one survey a month for the entire year. We distributed the survey in a contest format to provide an incentive and to make the program more interesting. It was very successful. We received an average of over 200 survey responses each month. A total of 407 adults with Fabry took at least one survey. A total of 121 participants took all 12 monthly surveys. Then, we took a year off to focus on other programs. In 2016, we plan to distribute one survey per quarter to continue to learn useful information that will benefit our community.
To ensure we can contact you to provide the periodic surveys, please keep your NFDF newsletter subscription current and please read the newsletters promptly so you don't miss the survey due dates.
Thank you to everyone who has participated in the past and to those who participate in the future. Your help is making a difference to many others!