Alpha-1 Advocacy Alliance

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

Welcome! to the Alpha-1 Advocacy Alliance!
“Our mission is to improve the health and well being of those affected by Alpha-1
through support to patients, educating healthcare professionals
and advancing public policy for the Alpha-1 Community.”

Alpha-1 Advocacy Alliance Features ......

“President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law” "This is a tremendous victory for every American not born with perfect genes - which means it's a victory for every single one us," said Representative Louise Slaughter (D-NY). "Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination."

The Alpha-1 Advocacy Alliance is proud to announce the
“Free Group Therapy Monthly Presentations”

Wednesday: July 2, 2008 -- 7:00 pm Eastern time.

"Life After A Transplant"...Transplant Recovery, Mediations,
Post-Transplant Tests, and Rehabilitation
“ASK PAT” -- Pat Slavin, LCSW and a veteran Alpha-1 patient herself, will host this free group therapy monthly presentation every first Wednesday of the month. She’s the expert so take this opportunity to get the answers! Simply call the toll free number 1-866-532-6336 and punch in the code 9486777 to listen in on the call. Pat’s presentation includes time to ask questions.

June presentation Transplant Part V "Fundraising"
other presentations at Support

"Educational Scholarship Grant " The Alpha-1 Advocacy Alliance announce the availability of a new dedicated scholarship in honor of our Alphas lost. Many of our fellow Alphas have asked that donations be made to the A1AA in their honor at their passing. This bequest is now further recognized by going directly into the Alpha Memorial Educational Award. The Alpha-1 Advocacy Alliance will offer at least one $500.00 grant each year for secondary educations (college or graduate studies) to an Alpha-1 individual who fulfills the requirements of the grant.

“Senate Passes Historic Bill on Genetic Information Nondiscrimination”
Americans Can Take Advantage of Health Advances without Fearing Discrimination. The Genetic Information Nondiscrimination Act (GINA) paves the way for the responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.

“Kamada was Granted New Orphan Drug Designation...for the Treatment of Bronchiectasis”
Kamada (TASE: KMDA), a biopharmaceutical company which develops, manufactures and markets specialty life-saving therapeutics, announces today that the company was granted an Orphan Drug Designation to its Aerosolized Alpha-1 Antitrypsin (AAT) product to treat Bronchiectasis.

Finding an Article using OJOSE. Online JOurnal Search Engine (OJOSE) is a free powerful scientific search engine enabling you to make search-queries in different databases by using only one search field.

State-of-the-Art Fibroscan Technology ... For Liver Disease Diagnosis ... A new FibroScan® machine that uses the latest technology for diagnosing liver damage ... News Room

FDA Approves Dey, L.P.’s Perforomist(TM) (Formoterol Fumarate). Inhalation Solution for long-term, twice-daily maintenance treatment of bronchoconstriction for emphysema and chronic bronchitis, also known as Chronic Obstructive Pulmonary Disease (COPD).

Support Alpha-1 Advocacy Alliance It’s simple! It’s easy! Online shopping is fun and now, it can help Alpha-1 Advocacy Alliance. Simply sign up at www.igive.com and list A1AA as your target charity. Each time you purchase from a participating store, that store will donate up to 10%

in your name to the Alpha-1 Advocacy Alliance. And, now ,when you sign up, they are offering an extra $5.00 donation. So, sign up today and help us help our fellow Alphas through the work of the Alpha-1 Advocacy Alliance.

Panniculitis...Alpha1 Antitrypsin Deficiency ... Nodular panniculitis refers to inflammatory nodules in the subcutaneous fat. Nodules may be, single or multiple, localized or generalized, and vary in size from a few millimeters to several centimeters in diameter. They are generally firm, red and tender... full story

Bone mass continues to increase in liver transplant patients, despite early loss. -- A new study on bone loss in patients with liver disease before and after transplant .

Less drug better for transplant survival Immune system can accept donor tissue
The regimen avoids steroids and encourages the immune system to welcome the donor tissue, explained Dr. Rakesh Sindhi, co-director of pediatric transplantation at Children’s Hospital.

A1AA Shoppe is now open online! Check out the A1AA T-Shirts, iGive.com, Alphapotamus, renew and order new magazine subscriptions on line. Help raise money for the Alpha-1 Advocacy Alliance. Support the Alpha-1 Advocacy Alliance. Help us help our fellow Alphas through the work of the Alpha-1 Advocacy Alliance!

Personal Oxygen Concentrator (POC)...Travel Usage
Under the “Americans with Disabilities Act”, you may request a gate pass from the airline at the check-in counter for a friend to accompany you to/from the arrival/departure gate to retrieve/deliver your portable oxygen.

Special Problems in Long-term Survivors of Lung Transplantation
Many of the problems affecting long-term survivors are not well defined in terms of incidence or prevalence because many patients relocate and receive their “late” care in their hometowns.

...Alpha-1 Advocacy Alliance
“News Room”

...Up to Date News...

“President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law”
“Senate Passes Historic Bill on Genetic Information Nondiscrimination”
“Kamada was Granted New Orphan Drug Designation...for the Treatment of Bronchiectasis”
“China's drug watchdog...State inquiry into bogus blood scam.”
“EMEA Approves Kamada’s Plans for Phase II/III Clinical Trials of the Aerosolized Form of AAT.”
“China’s Drug Watchdog…State Inquiry into Bogus Blood Scam.”
“State-of-the-Art Fibroscan Technology for Liver Disease Diagnosis.”
“PARI And Kamada Announce Positive Intermediate Phase I Results for Inhaled Alpha-1 Antitrypsin.”
“FDA Approves Dey, L.P.’s Perforomist(TM) (Formoterol Fumarate).”
“Common Cold Virus Leads to Death in Lung-transplant Patients.”
“A Statement from the NIH Director, Elias A. Zerhouni, M.D., Regarding the National Institutes of Health Reform Act of 2006.”
“Talecris Continues Global Expansion into Europe.”
“Three Things COPD Sufferers Should Know during the Cold Season.”
“Gene Therapy Shows Promise against Hereditary Lung Disease.”

The Phone Card Program to assist Alpha-1 Patients ( Personal Advocacy: “The Phone Card Program” ) The Alpha-1 Advocacy Alliance and Coram Healthcare are pleased to announce “Call Home on Us.” This new Personal Advocacy Program provides phone support for those needing a little bit of help when they are away from home. For complete details click on the link above.

FOR INFO CALL: 540-948-6777 or
Toll Free 1-866-FOR-A1AA (1-866-367-2122)
Fax # 540-948-6763

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Alpha-1 Advocacy Alliance
PO Box 202, 103 Rapidan Church Lane Wolftown, VA 22748
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Wednesday: July 2, 2008 -- 7:00 pm Eastern time.

"Life After A Transplant"...Transplant Recovery, Mediations, Post-Transplant Tests, and Rehabilitation

"Life After A Transplant"...Transplant Recovery, Mediations,
Post-Transplant Tests, and Rehabilitation