[nfb-db] Fwd: [DBCN] new usher syndrome registry

[Janice Toothman]

Good Evening,
I received this message from another deaf-blind email list and thought 
that I would share it with everyone.

Janice


-------- Original Message --------
Subject: 	[DBCN] new usher syndrome registry
Date: 	Sat, 14 Jul 2012 16:56:35 -0400
From: 	Angie <dotbug3 at gmail.com>
Reply-To: 	db-cnet at googlegroups.com
To: 	news db <dbns-l at googlegroups.com>, cn list 
<db-cnet at googlegroups.com>, tech db <dbtechies at googlegroups.com>
CC: 	my blog <dotbug3.blogbug at blogger.com>



New Usher Syndrome Registry
   If you know you have Usher Syndrome and would like to register
on this data base,
please follow the directions listed below.  This registry is for
everyone; regardless of age, location and severity of the
syndrome.
Feel free to pass this information along to anyone you know that
has
Usher Syndrome.
If you have any questions, you are welcomed to contact me.  Thank
you.
Dorothy Walt, Regional Representative
Helen Keller National Center, Northwest Region
Dorothy.Walt at hknc.org


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.
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 Dunning, Executive Director

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