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.

 

 


 

Fundraising

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.
If you are wanting to help raise funds for our charity, please let us know by using our Contact Us form.


 Latest News

 

Alpha-1 Awareness visits Mereo BioPharma

On Monday 17th December we went to see Mereo BioPharma at their office in London. Mereo BioPharma have recently started dosing in their Phase 2 clinical trial for MPH-966 (alvelestat). The study will recruit in America, Canada, Europe and the UK. The
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Alpha-1 Awareness Visit the people at UCL who are looking for a cure for Alpha-1

On the 26th July 2018, Alan Wooler went to see some of the team at UCL who are doing the vital research into finding a cure for Alpha-1. Alistair Jagger who is a PhD student in Prof Lomas’ team was kind enough to show Alan around the labs and answer
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New meeting to discuss molecular therapies for liver disease in alpha-1 antitrypsin deficiency

22nd December 2018 A new meeting for clinicians and science researchers has been announced in September 2019. The idea is to discuss therapy of the liver disease in α1-antitrypsin deficiency (AATD). The conference will provide a comprehensive overvie
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We celebrate being the oldest Alpha-1 UK charity with our 10th Year Celebration Day party

21st July 2018   On 8 July 2018, Alpha-1 Awareness hosted its 10 year Celebration Day, celebrating 10 years since the founding of the charity. World-renowned speakers were invited to share their knowledge on Alpha-1 Antitrypsin Deficiency, Profe
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New Children’s club

11th July 2018 EXCITING NEWS…. We have now launched the new Alphie Kids Club. The first club for children affected by Alpha-1 where they can come along and download colouring in pages, puzzles and become a member and receive our exclusive membe
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Our chairman Alan Wooler chosen as “Alpha-1 Leader in Action” in the latest Alpha-1 Global Newsletter

8th June 2018 Our charity is here to bring awareness of AATD and to support those affected.  We are making a big difference and many people rely on our help.  It is wonderful when other groups help to tell others who we are and what we do. In the lat
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Alpha-1 Awareness UK changes charity name

3rd June 2018 Our charity was originally created to support people affected in the UK with AATD.  It didn’t take long before we started to help those from other countries and today we stretch as far as Australia and New Zealand.  It is for this
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AlphaNet’s CEO Robert Barrett to Retire, New CEO named

May 21, 2018 AlphaNet President and CEO Robert C. Barrett has announced his retirement after 20 years at the helm of the innovative not-for-profit organization. The AlphaNet Board of Directors has named Mark B. Delvaux as his successor effective June
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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.