Become a member of the NIH’s Rare Disease Program

We have become one of the first  8 members of the NIH’s Rare Disease Data Repository Program. This is one of the important projects at the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH) in the USA. I have also become a steering committee member of this program. The purpose of this program is to share the de-identified data and understand the nature of each rare disease. I welcome any feedback from you. I bring your ideas to the committee meeting at NIH.

Our ongoing drug development program with NCATS, NIH, is moving forward. We have identified two promising new drugs for Wolfram syndrome. I have been trying to secure funds for further developing these new drugs and bringing them to our patients. Although there are multiple challenges, we are moving forward.

Thank you for your continued support. I think of you and your challenges.

Take care,

Fumi Urano