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created to provide families,
physicians, and support providers with information about an inherited
disease called Neurodegeneration with Brain Iron Accumulation (NBIA).
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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 All historical references to HSSA and HSS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.
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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.
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Other Upcoming Fundraising Events:
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Free and easy ways
to raise money for NBIA Disorders Association. Click
here to find out about the iGive.Com and GoodSearch.Com programs.
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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.
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| NBIA Disorders Association |
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2082 Monaco Ct. |
| El Cajon, CA 92019-4235 |
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Phone: (619) 588-2315 |
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FAX: (619) 588-4093 |
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E-mail: info@NBIAdisorders.org |
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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
Site Index displays detailed
update information
Helpful Hints for
maximizing viewing area on this site
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 
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