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Formerly Hallervorden-Spatz Syndrome Association Welcome to the NBIA Disorders Association Home page |
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| created to provide families, physicians, and support providers with information about Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| 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 All historical references to HSSA and HSS were left as is, so you will see these terms used throughout the site for articles and information gathered prior to 2003.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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| NBIA
Disorders Association Scientific and Medical Advisory Board (SMAB) Position statement: use of experimental drugs and other therapies, including deferiprone |
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| In 2007 Prof. Dr. Lars Timmerman and Dr. Amande Pauls received a seed grant from our sister organization in Germany, Hoffnungsbaum e.V., funding a retrospective study looking at NBIA patients who underwent DBS around the world, and were able to show that DBS on average improves dystonia in NBIA patients. The retrospective study was recently published in BRAIN, a top ranking international journal in clinical neurology. A free download of the paper is available at
http://brain.oxfordjournals.org/cgi/content/full/awq022v1. |
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| Pepsi Grant - On the last day of each month we will be applying for a grant thru the www.RefreshEverything.com site under the Health category. The first 1000 applications are accepted for the following month and it is a race to get thru, but we will continue trying. Please check back on the first of each month to see if we have been successful. Once we are accepted, you will be able to vote once a day for NBIA Disorders Association in an effort to win a $250,000 grant. Our proposal is titled "Hope for Miracles: Support for research to cure rare disorders." | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| New! Newsletter
Archives Available April 2003 - present |
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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 July 15, 2010 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
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