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PNH Paroxysmal nocturnal hemoglobinuria

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Old Thu Nov 22, 2007, 12:28 AM
Splitz Splitz is offline
Join Date: Nov 2007
Location: Central coast of CA, USA
Posts: 4
pnh forum??

Does anyone know who administrates the site? I registered several days ago but have yet to receive the activation link. Any help appreciated,,

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Old Thu Nov 22, 2007, 01:46 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,496
Are you referring to the PNH Support Group forums?

On their registration page it says
You will receive a confirmation email with a link to a page you should visit to activate your account in the next 24 hours.
so you clearly should have gotten the activation email by now. Their forum software could be having trouble, but a more likely explanation is that the activation email was sent but didn't reach you, probably due to email filtering.

Many Internet Service Providers filter email to weed out spam. Many consumers use their own email filters. These filters often think that forum activation messages, which are automatically generated form letters, are spam. So the messages get quarantined, deleted, or put in a "spam" or "junk" folder.

If you are using your own email filter, turn it off while you try again or tell it to allow email from pnhdisease.org.

Users of AOL have this problem more often than others, since AOL's filters are especially tough. If you are an AOL user, look in your Spam folder or add webmaster@pnhdisease.org to your Address Book so you'll get their messages from now on.

If this advice doesn't help, you can contact a PNH Support Group administrator at webmaster@pnhdisease.org.
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