Alpha-1 Advocacy Alliance - Support Other Alphas

Won't you sign up for membership? Simply click HERE
Joining is free, easy and private.

to sign up and become a member of our growing community of committed individuals striving to be well informed and educated about Alpha 1.

Read our Privacy Policy and be assured we are here to help. Let us know what we can do for YOU!

Testing for AAT Deficiency
Simply click HERE Alpha One International Registry
provides AAT Deficiency Testing. This AAT Deficiency Testing is a
COMPLETE CONFIDENCIAL TESTING SERVICE
and WITHOUT COST TO YOU.
This testing will include measuring the CONCENTRATION of AAT in your blood, determining the TYPE of ATT in your blood and (where appropriate) determining your AAT genotype by testing the DNA in your blood; State of the art, full-spectrum Alpha-1 Testing .

Please read the detail at: AAT Deficiency Detection Center

Want to Talk with
Others Like Yourself?

There are email lists and chat rooms where you can meet others like yourself with Alpha-1, as caregivers or patients or relatives. We encourage you to sign up, introduce yourself and then sit back and enjoy the exchange of information and ask questions. Many of the participants are happy to share their stories and experiences. Nothing you could ask is stupid or naive. Someone else has probably asked it too!!

Alpha Liver E-List

For a specific liver list where the discussions are dedicated to the treatment of alpha liver patients, the email list is: Alpha-Liver@home.ease.lsoft.com

You must first contact Nancy Cropper to be added to the list. Contact her at : ALPHA-LIVER-REQUEST@home.ease.lsoft.com and ask to be added to the liver list. This liver list stays away from chit-chat and stays on the serious side, trying to focus on the disease.

Alpha Lung E-List

ALPHA-1-REQUEST@home.ease.lsoft.com can get you signed up for the lung email list by simply requesting to be added to the lung list. List Monitors will add you right in. To send an email to that list after you have joined, email at Alpha-1@home.ease.lsoft.com You may receive either of these lists in one digest format or receive each message as it is sent out. You can expect anywhere from five to fifty messages a day on the regular list but only one if you opt for the digest format.

Alpha1_Lungs_and_Life

There is also another email list that is available with few restrictions on topics of discussions. This is the lungs and life list and is available by going to this web site and signing up:

http://www.groups.yahoo.com/group/Alpha1_Lungs_and_Life

We encourage you to give at least one of these lists a try. You will find a wealth of information just by listening to the experiences of others.

Chat groups:

For chatting with others, try www.spiderspun.net (click on "spiderchat") in the evenings. Here, a wide variety of patients get together and discuss every subject imaginable. Most of the time, people join in around nine (9) pm Eastern time but other times can be arranged.

One on One - Alpha-1 Advocacy Alliance

For a closer relationship, you can call Alpha-1 Advocacy Alliance and ask to be included in the "One on One" program. We will match you with someone who has a similar experience to you, but can help you with much of what you are going through.

If you are a single parent, it often helps to talk with another single parent who is past the stage that you are dealing with. They may have some good suggestions to help your transitions run smoother or make your decisions a little easier. If you are on the road to transplant, we can connect you with someone who has been there and experienced that road. Perhaps as a caretaker you would like to talk or vent to someone else who has also been in a similar situation. We can do that too.
Just tell us what you need! 1-866-FOR-A1AA.

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Alpha-1 Advocacy Alliance, PO Box 202, 103 Rapidan Church Lane, Wolftown, VA 22748
Telephone: 540-948-6777 or 1-866-FOR-A1AA (1-866-367-2122) Fax # 540-948-6763
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