Those who have no direct involvement, or are simply seeking to satisfy their curiosity may also contribute their research efforts.   If you fall within this latter category we appreciate your interest and understanding and respect of the privacy of those who have this life consuming disease.

It is not uncommon for teachers, ministers, friends and distant relatives to seek information on Wolfram Syndrome.  We welcome your inquiries and suggestions. We have nothing to hide, but we do wish to protect the dignity of those who are affected by this disease.  Just for example, you would likely not wish to announce to the whole world the complications that you may encounter during your menstrual cycle or the complications of prostrate disease would you?  Well, the same is true of our participants.

Thank you for your kind understanding.