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 if you wish to subscribe to our listserv http://www.galists.org/read/all_forums/subscribe?name=nbiadisorders.

Follow the directions by entering the e-mail address you wish to use, enter your first and last name where it asks for your name and pick a password. Then click on "Subscribe" and you will receive a message saying your subscription needs to be approved by the list administrator (Patty Wood). Once it is approved, you will receive a welcome message from the listserv and you will then know that you are subscribed.

Once you are subscribed, if in the future you would like to change your password or other settings, such as receiving in digest, then click on this link http://www.galists.org/read/login/?forum=nbiadisorders which will take you to the new listserv interface where you can make these changes. You should use your e-mail address and the new password to log in. Once you have logged in, you may need to click on the "My Account" tab again to make changes. If you make any changes on the "My Account" panel, be sure to "Save Changes" before leaving. Click on the various tabs up on top to see what information is available to you as a listserv member.

If you want to check archived messages, you also go to http://www.galists.org/read/login/?forum=nbiadisorders and login using your email address and password. Then click on the "Messages" tab to display the messages. This list is archived and searchable by keywords. To search the archives, click on the "Search" tab and put in a word of your choice. Messages are listed with the most current date at the top of the list, but you can sort the list by clicking on the little up/down arrows next to each column heading. All archives will be for listserv members only and will not be available to the general public.

To "unsubscribe" from the listserv at any time, simply click on the "unsubscribe" link which can be found at the bottom of all messages from the listserv. Once this is done, you will be sent a message from the listserv indicating that you have been "unsubscribed".

The NBIA Disorders listserv address is NBIAdisorders@listserv.galists.org. Please be sure to put this address in your address book after receiving the welcome message. This is the address that you will use to send messages to the listserv.

Please Note:
Many people are using e-mail filters in order to control the amount of unwanted e-mail (SPAM) they receive. If you are using filters, then be sure that they are set so that you can receive e-mail from the listserv and also from Patty Wood, NBIA president and list moderator whose address is pwood@NBIAdisorders.org before subscribing. If you subscribe and have not received a notice saying your subscription is pending within 24 hours, then you know there is some type of problem.

If you choose not to do this, then you may not be able to receive postings from the listserv or e-mail from Patty Wood. This may affect our ability to approve your subscription as also due to the problem of spam and unwanted e-mail, most listservs of this type use moderator approval as a way to address and control this problem. The list moderator may need to contact you through e-mail before subscription approval, requesting further information before adding you to the list.