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.

Charity to close

16th September 2021

After much debate and a considerable amount of time and thought, it is with great sadness we must announce that the Alpha-1 Awareness charity will not be continuing.  As of the 26th September 2021 we will be dissolving.

Given the above circumstance the AGM that was planned for the 25th will no longer go ahead.


Unfortunately, we have not been able to fill the chair role, with everyone on the board being volunteers and many having full time jobs and other commitments, it has not been possible for any of us to take on that position.  I know I speak for all the board when I say we truly wish we were able to continue, but we would not be giving it the time and effort it deserves.


We would like to thank all fundraisers and supporters past and present who have helped raise money to this charity whether it be large or small.  All the remaining charity funds will be going towards research in the hope to find that illusive cure.


We are, however, going to keep the Facebook group running  (it can be found here: https://www.facebook.com/groups/alpha1awarenessuk), as we still wish to offer all our members support within a safe environment. The group is more like an extended family and we would hope that many of our ‘family members’ will continue on with us.


We are truly sorry that we have to let the charity close, it feels like the end of an era, but please know that we will still be here to support you.


From all of us on the Board

 Latest News


ASTRAEUS trial – We need you!

What is happening with clinical trials in the UK as we slowly emerge from COVID-19, and how can you continue to support clinical research into new treatment options? The last year has seen intense focus on the development of treatments and vaccines f
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Our Chairman steps down

On the 26th September 2021, our chairman Alan Wooler is to step down due to personal commitments. For those who are not aware, the majority of the Board of directors who run our charity also have day jobs.  Alan works in IT and has been with the same
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HMR Opens up their trial for people with taking inhalers

HMR have opened up their trial to now accept people who are taking inhalers.  If you are PiMZ, PiSZ, or PiZZ, you might be able to join in this new exiting trial. Please contact HMR direct using the contact email shown below quoting 20B005 in your em
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Survey for children & young people with rare disease who live in the UK

RCPCH &Us an @BPSUtweet have a survey for children & young people aged 13-25, who have a rare disease & live in the UK. We want to hear your views. To complete the survey visit: https://tinyurl.com/xmadvv8x #voicematters #youngpeoplematte
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α1-Antitrypsin deficiency and the risk of COVID-19: an urgent call to action

The COVID-19 pandemic is a global emergency. Identifying populations who are at risk of severe complications is crucial in developing special measures to prevent or reduce severe illness and mortality in vulnerable patients. Emerging evidence indicat
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Z Factor to host a virtual meeting for Alpha-1 Awareness to give a summary of their trial medicine and their overall programme

  We were pleased to announce back in August 2020 that the first person was dosed with ZF874, a potential treatment for alpha-1-antitrypsin deficiency.  Then on the 24th September we published the details for HMR who are running the trail on beh
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HMR Opens up their trial for people with one or two faulty ‘Z’ alleles.

At the beginning of their trial, HMR were looking for healthy PiMZ people to partake in their new clinical trial.  We are pleased to say that they have now opened it up to people with one or two ‘Z’ alleles.  If you are PiMZ, PiSZ, or PiZ
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New blood test predicts which COVID-19 patients will develop severe infection

18th October 2020      Prof. Gerry McElvaney, Chairman of the Department of Medicine and Vice Dean of the School of Medicine, Royal College of Surgeons in Ireland and Prof. Gerard Curley,   Professor of Anaesthesia and Critical Care at
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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.