Living with Wolfram Syndrome

This site is intended to aid those who are affected by Wolfram Syndrome.   This is not a scientific or medical information site, but an information site  prepared by those who are similarly affected.

By now you have probably discovered that you or a member of your family has been diagnosed with Wolfram Syndrome, (hereafter referred to as “WS”) also known by its acronym, DIDMOAD.   If this discovery is recent, it is understandably accompanied with a flood of fears and anxiety that can only be appreciated by those who have undergone a similar experience.   We offer this very foundation of experience as a means of helping you and your family members.

For many of us, the knowledge that WS is a rare disease, was quite an understatement.  For years there was no contact what so ever with anyone who had the disease.  However the miraculous invention of the Internet and the common communication which it provides has opened a world of opportunity for those who have been affected by WS.

The twin site serves as a location to post the URL of sites that contain information and research on WS.   As you locate other URL sites which may present new information you are encouraged to submit it so that it can be posted so that all may benefit from your hours of surfing for WS.

To use this site please select an option from the menu on the left of the screen.  To return to this page click on the back arrow on your browser (usually found at the top of your screen)