Welcome to the PNH file archive. This will be under extensive construction for the next while, but I hope to be able to provide it as a PNH info source on the fly, particularly for those who need info on PNH in a hurry. This particularly applies in those all-too-common cases where patients or medical personnel need basic access to information on short notice, and those that prefer on-line storage accessible anywhere in the world via the 'net.
In the next short while, I will be adding additional updates to the page, several of which include the link to Duke University's new PNH research centre, for contact info and support for PNH patients. I will also be adding new links to the page from pharmaceutical makers who have designed new drugs, such as Coumadin.
In addition, I will also be adding two new sections: A Bibliographical reference section on PNH papers and experiments conducted in the scientific community, and additional links to how this information applies in Canada and in the pharmaceutical world in general, including information on the laws that keep the industry investing resources into research and development for diseases like PNH which may not necessarily be economically viable, but nevertheless very important to those who are afflicted with PNH.
(Disclaimer: As with all information found on the internet, the creator & host(s) can not accept responsibility for the accuracy of the information posted here. It is meant to be used as a loose guideline, and should not be used as an official replacement for information from a recognized source, such as the New England Journal of Medicine. *All copyrights remain those of the originators*. Referrals for pharmaceutical products are posted for reference information only, and should not be considered product endorsements.
Last Updated: Oct. 11, 2003PNH file links (You must have Adobe!)
PNH basic explanations
What is PNH? Pt.1
What is PNH? Pt.2
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Duke University Medical Center
National Orginization for Rare Diseases
Yahoo!.com PNH community
Parlez-vous un moins français? Something for our French-Canadian visitors…
The core of it all, the Duke University PNH facility in Durham, North Carolina, USA. Breaking news, clinical research, etc.
Updated Dec. 20, 2002: New research data in from Alexion Pharmaceuticals.
Updated January, 2003: More info on Alexion & their Pharmaceutical Producer.
Coumadin, one of the newer meds for PNH:
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