Formerly Hallervorden-Spatz Syndrome Association

Welcome to the NBIA Disorders Association Home page

created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA).
 
As of January, 2003, our name changed from Hallervorden-Spatz Syndrome Association to NBIA Disorders Association.  All historical references to HSSA and HSS were left as is, so you will see these terms used throughout the site for articles and information gathered prior to 2003. All current references to the disease and our organization will reflect the new names.
  
You are cordially invited to participate in a Pampered Chef national fundraising event to support NBIA Disorders Association Research Fund. This fundraiser will be held April through May 2008 and we will receive approximately 40% of every dollar spent on products ordered. Please "click here" for more information and help us make this fundraiser a success.
 
Other Upcoming Fundraising Events:
  
Free and easy ways to raise money for NBIA Disorders Association. Click here to find out about the iGive.Com and GoodSearch.Com programs.
  

NBIAdisorders Listserv
The NBIA disorders listserv is open to anyone who is interested in Neurodegeneration with Brain Iron Accumulation. Pantothenate Kinase-Associated Neurodegeneration (PKAN) is a disease that is a specific type of NBIA. This can be individuals with NBIA, their families, friends, doctors, caregivers, or anyone else who is interested. Once you subscribe, every e-mail sent to the listserv will automatically go out to everyone who has subscribed to the list.  It comes right into your e-mail so you don’t have to go somewhere else and check for postings.  You may respond to messages or learn by reading them.
 
We believe this will be very helpful to families who want to share information, ask questions or exchange news about therapies they’ve heard about or tried. It’s also a way for families or affected individuals to give and receive emotional support. Because we are so spread out geographically, this is an opportunity for families to network in a very important way.
"Click" on this link to find out more about this new feature and follow the instructions if you wish to subscribe.
  

NBIA Disorders Association
2082 Monaco Ct.
El Cajon, CA 92019-4235
Phone: (619) 588-2315
FAX:  (619) 588-4093
E-mail: info@NBIAdisorders.org
  
Need a translation for this web site? Go to  http://babelfish.altavista.digital.com and under the heading "Translate a Web page," put www.NBIAdisorders.org and that you are translating from English to whatever language you need, and the entire site will be translated for you.

  
Last updated on April 17, 2008
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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