Formerly Hallervorden-Spatz Syndrome Association
PLEASE NOTE HISTORICAL REFERENCES TO HSSA AND HSS
 
 
 


Melissa Woods
Director of Social Media

Hello everyone! I'm excited to work with the NBIA Community as the new Director of Social Media. We are in the process of revamping our Facebook page at www.facebook.com/NBIADisorders and we now have a Twitter account at www.twitter.com/NBIADisorders. You can create a personal Twitter account and then follow us at @NBIADisorders. The Global Genes Project and RARE Project are currently promoting the Global Rare Disease Day on 2.29.2012, so now is a great time to start using Twitter!  

We are also in the process of creating profiles on LinkedIn and YouTube.  

If anyone currently blogs about NBIA and would like their blog connected to our Social Media accounts, please let me know!  

Thanks,
Melissa
socialmedia@NBIAdisorders.org

 
 
 

Sixth International Family Conference May 13-15, 2011
Closing Ceremony Video Celebrates Our 15 Year Anniversary

"Click" on image to view video". It may take a while for it to download.
 
 
Available Now! "Music From the Heart for NBIA" compilation CD. 16 songs from 12 bands who graciously donated their music and talent. There is a little bit of Country, Pop, Rock, and Easy Listening. Something for everyone.
 
The price of the CD is $10.00 plus shipping and all proceeds go to NBIA Disorders Association. Please contact Mike Cohn at mikecohn2226@comcast.net for orders and information.  
 
New! Newsletter Archives Available
April 2003 - present
 
 

NBIA Miracle Video


 

  

  

NBIA Disorders Association
2082 Monaco Ct.
El Cajon, CA 92019-4235
Phone: (619) 588-2315
FAX:  (619) 588-4093
E-mail: info@NBIAdisorders.org
  
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Last updated on February 4, 2012
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If you have comments or suggestions, e-mail me, Patricia V. Wood, at pwood@NBIAdisorders.org   
Web site design & maintenance by Davida Strauss  davida99@cox.net