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

 

Portable device could boost number of lung transplants

A new device that can store and transport donor lungs has been developed by researchers in Germany. The Organ Care System is the first portable device that uses the process of normothermic perfusion, which uses the principle of keeping the lungs at b
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epetition for better treatment

An epetition has been created by Dr Ravi Mahadeva, the chairman of the Alpha-1 Alliance. Dr Mahadeva writes: “We’ve just launched an online petition to the Department of Health calling on the Government to nationally commission a specialised se
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Cambridge University & GSK

A new collaboration based at the University of Cambridge will aim to discover and develop new medicines to treat liver disease. The partnership, between the University and global pharmaceutical company GlaxoSmithKline (GSK), will build upon the work
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Grifols Safety Trials

Grifols today said it plans to initiate a safety trial later this year of a new inhaled formulation for treating emphysema due to alpha1-proteinase inhibitor deficiency. The Barcelona, Spain-based company said it would initiate a safety trial of a no
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New Board Members

Alan and Emma Wooler have agreed to join the Board of the Charity. They have been keen supporters of the organisation for some time and they bring a depth of personal experience of bringing up an Alpha child. The existing board welcome Alan and Emma
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British 10K London Run

Massive congratulations to everyone who ran in this year’s British 10K race in London. A special thank you to the five runners who took part and raised money for the charity. Here is Denis Horellou with his novel Alpha. Amazingly, at the end th
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Campaign for better Access

The Alpha-1 community has formed an unprecedented alliance to campaign for better access to treatment for Alpha-1 patients. The recently established Alpha-1 Alliance will be campaigning for a nationally commissioned specialised service for Alpha-1 an
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World Spirometry Day 2012

The World Spirometry Day 2012 campaign coincides with the Olympic Games and aims to encourage people to exercise and look after their lungs regardless of their age or physical ability. Their website, www.wsd2012.org, is a useful source of information
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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.