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.

 

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 Latest News

 

Kamada-Baxter Agreement

Kamada enters into an exclusive distribution and manufacturing agreement with Baxter International for Kamada’s treatment of Alpha-1 antitrypsin Deficiency, the inhaled product called Glassia. Kamada will receive staged payments of $45m including an
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Europlan

In 2009 Health Ministers from each EU member state signed a European Council Recommendation that called on Member States to develop and implement strategies for the treatment and care of people living with rare diseases. Currently many European count
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European Alpha1 Congress

The Fifth European Congress of the Alfa Europe Federation was held in London on the 9th and 10th of July 2010. Alpha-1 Awareness UK was the host association and the event was sponsored and organised by Alpha Europe Foundation. The event was a great s
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The Cochrane Report

The recently published Cochrane Report caused outrage in both those countries that have augmentation therapy and those that aspire to have it. The report was written by Professor Peter Gøtzsche of Denmark and co-authored by his wife. Their findings w
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Research Grants

Alpha-1 Awareness UK have transfered £1000 to support research at King’s College, London. This is mainly to benefit Alpha children. More good news is that our colleagues in America, the Alpha One Foundation guided by CEO John Walsh, have matche
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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.