How often will I receive updates from the DFR?

You will receive updates via email about every 3 months. Updates from the DFR may include (1) requests to update your demographic, health, or genetic data; (2) requests or reminders about new surveys, to finish incomplete surveys, or to start a new survey; (3) information about how to link or upload your medical records and/or for specific medical record requests.

You may also receive periodic updates via emails pertaining to updates about the DFR, news about research findings, general care guidelines or educational resources, information about meetings/conferences, opportunities to participate in clinical studies or trials, and/or notifications about future natural history studies and possible travel grants to Centers of Excellence.