My visit to NIH – I need your help: information

As I mentioned before, I will visit National Center for Advancing Translational Sciences (NCATS), National Institutes of Health in April to establish a three-way collaboration between my team, NIH, and patient organizations. In short, we may be able to develop novel treatments for Wolfram syndrome together with NIH. So this is very important for us.

I would like to have a letter of support from you. If you are running a patient organization, or a patient, or a family member, or a member of a patient support group, could you write a letter to me? I would like you to include the following information. Before you send me a letter, please send me email to “”.

1. Your background: Wolfram patients, Family Members of Wolfram patients, Friends and etc.
2. Your activities for raising awareness  of Wolfram syndrome.
3. Your willingness to help our clinical trials, clinical studies, and biomarker studies

Please address the letter to:
Fumihiko Urano, MD, PhD
Samuel E. Schechter Professor of Medicine
Director, Wolfram syndrome International Registry
Washington University School of Medicine
Barnes-Jewish Hospital
660 South Euclid Ave, Campus Box 8127
St. Louis, MO 63124, USA

Thank you for your support and encouragement.

Warmest regards,

Fumi Urano