[nfbwatlk] FW: Usher Syndrome Registry

[Nightingale, Noel]

From: DBSC Info [mailto:info at seattledbsc.org]
Sent: Saturday, June 23, 2012 12:43 PM
To: DBSC Info
Subject: Usher Syndrome Registry

Usher Syndrome Registry is Live!

The Usher Syndrome Registry is now Live! There are a number of potential treatments for Usher syndrome nearing clinical trial. We need to better understand the normal progression of the disease and identify candidates for clinical trials. The Usher syndrome registry is the solution to those problems.

We seek to voluntarily register everyone in the world with Usher syndrome. The registry is secure and meets HIPAA regulations for confidentiality. By registering you will be ensured of receiving the latest information on clinical trials and the latest treatment advances. Your participation is critical. You ARE the cure.

Please consider registering today at www.usher-registry.org<http://www.usher-registry.org>.  Just as important, please share this information with anyone you know with Usher syndrome or any organizations in contact with people with Usher syndrome.

Thanks for your help in this important endeavor.

Mark
The Coalition for Usher Syndrome Research

Elizabeth Bass
Administrative Assistant
The Deaf-Blind Service Center
info at seattledbsc.org<mailto:info at seattledbsc.org>