Welcome to Alpha-1 Awareness, a UK Charity that Supports people with AATD

AATD or Alpha-1 Antitrypsin Deficiency is a lack of the protein alpha-1 antitrypsin (AAT) which is produced in the liver. The main job of AAT is to protect the lungs. A deficiency can lead to life-threatening lung and/or liver disease.

The first signs and symptoms of lung disease caused by alpha-1 antitrypsin deficiency usually appear between ages 20 and 50.
The symptoms are:

  • shortness of breath following mild activity
  • reduced ability to exercise
  • wheezing

About ten percent of infants with the deficiency show signs of liver damage at birth. Fifteen percent of adult Alphas also develop liver disease.

Only a small fraction of alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition.

Our charity is run by non-paid volunteers who all are either affected by Alpha-1 or have a family member who is. We all have a connection to Alpha-1 and this isn’t our day job. We have a real passion for the charity and for supporting people who are affected, their families and friends.

This website was created so that people can learn more about Alpha-1 and how to get support.  We produce our own booklets which people can download and view digitally (click here) and even request that a set be sent to them in the post for free. We have a private Facebook Group where we help to support people in a safe environment. If you would prefer one on one support, then you can email us directly on ‘support@alpha1.uk‘ or use our Contacts Us Form. We care, we want to help those affected, their families and their friends. We are also proud to be the only UK charity that is donating money to go directly to the research of a cure.

 


 

Fund raisers

We would like to thank all those that raise funds for us, without you, we would not have a charity & we would not be able to support those affected with Alpha-1 and their families.
Please help the below people by reading their stories, if you are able, please make a donation.

 

 Donate with JustGiving

 Latest News

 

Organovo announces the FDA has granted orphan drug designation for the Company’s treatment of alpha-1

28 December 2017 –  Organovo Holdings (NASDAQ:ONVO) announces that the FDA has granted orphan drug designation for the Company’s treatment of alpha-1 antitrypsin deficiency (“A1AT”) with its 3D bioprinted liver therapeutic tissue. Among the ben
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Kamada Announces Collaboration with BGN Technologies for Alpha-1 Antitrypsin Research

7th September 2017 –  Collaboration to be Led by Professor Eli Lewis, One of World’s Leading Alpha-1 Antitrypsin Researchers Kamada Ltd., a plasma-derived protein therapeutics company focused on orphan indications, announced today a colla
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Amanda Stimpson – Joins the Charity Board

2nd September 2017 –  Amanda was diagnosed as being an Alpha end of 2016, she like everybody who is told they have a condition that they have never heard of, was very worried about he future. Amanda found our charity and we were able to put her
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Cori Ruktanoncha becomes a Trustee of the charity

30th August 2017 –  We are very honored that Cori agreed to become the 4th Trustee of our charity. Cori only joined us in the beginning of 2017, but we have been very impressed with the work she has done for us, the way she talks to our members
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New Logo and Domain name

1th July 2017 –  We announced in April we were donating 10% of all donations to finding a cure for Alpha-1. We now wish to announce 2 more exciting changes. We were the first alpha-1 support group to receive charity status in the UK, Wales and
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UK’s National Health Service Approves Daxas as Treatment for COPD

28th June 2017 –  The United Kingdom’s National Institute for Health and Care Excellence (NICE) recently approved Daxas (roflumilast), developed by AstraZeneca, as a treatment for chronic obstructive pulmonary disease (COPD). The new indication
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Kamada Withdraws MAA For Inhaled Alpha-1 Antitrypsin

23rd June 2017 –  Kamada Ltd. (NASDAQ:KMDA) (TASE:KMDA), a plasma-derived protein therapeutics company focused on orphan indications, today announced that the Company has withdrawn the Marketing Authorization Application (MAA) for its proprieta
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Kamada Presents Updated Data from Phase 2 Clinical Trial of Inhaled Treatment of AAT

Previously announced top-line data from this trial indicated that patients treated with Kamada’s inhaled AAT demonstrated a significant increase in endothelial lining fluid (ELF), AAT antigenic and ANEC levels compared to the placebo group. The updat
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This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.