Welcome to Alpha-1 Awareness, a UK Charity that Supports people with AATD – (BACKUP)

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.

British 10K Run

Date: Sunday 21st July 2019
Location: London

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.

TrekFest ~ The Peaks

Date: Saturday 31st August 2019
Location: Hope Valley, Derbyshire (S33 8RZ)

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.


 Latest News

 

Alpha-1 Awareness donate £10,000 to the research of a cure

On Monday 3rd February 2020, Alan and Emma Wooler of Alpha-1 Awareness went to UCL (University College London) to see Professor David Lomas, and presented him with a cheque for £10,000 to go towards his research of a cure for Alpha-1.   Alan Woo
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Researchers build a better lung model

30th January 2020   (Boston)–Using a combination of pluripotent stem cells (cells that can potentially produce any cell or tissue type) and machine learning (artificial intelligence that allows computers to learn automatically), researcher
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Danish Medicines Council Grants Approval for CSL Behring’s Respreeza as Standard Treatment for Severe Alpha-1 Antitrypsin Deficiency Patients

HATTERSHEIM AM MAIN, Germany, Jan. 24, 2020 /PRNewswire/ — Global biotherapeutics leader CSL Behring today announced that the Danish Medicines Council has published its final decision, approving human Alpha 1 Antitrypsin  (AAT) therapy and Resp
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Dicerna™ Receives Orphan Drug Designation From European Commission for DCR-A1AT for Treatment of Congenital Alpha-1 Antitrypsin Deficiency

LEXINGTON, Mass.–(BUSINESS WIRE)–Dec. 17, 2019– Dicerna™ Pharmaceuticals, Inc. (Nasdaq: DRNA) (the “Company” or “Dicerna”), a leading developer of investigational ribonucleic acid interference (RNAi) therapeutics, today annou
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Kamada Announces Enrollment of First Patient into its Pivotal Phase 3 InnovAATe Clinical Trial of Inhaled AAT for the Treatment of Alpha-1 Antitrypsin Deficiency

Rehovot, Israel, December 16, 2019 — Kamada Ltd. (NASDAQ & TASE: KMDA), a plasma-derived protein therapeutics company, announced today that the first patient has been randomized in Europe into its pivotal Phase 3 InnovAATe clinical trial evaluati
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Research Priorities in Alpha-1 antitrypsin deficiency (AATD)

We need your help! Being led by the European Alpha-1 Research Collaboration (EARCO), a survey has been created to give us all input on what we think are the priorities for research should be. We are asking people with Alpha-1 Antitrypsin Deficiency (
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New promotion, New Board Member and New website!

We at Alpha-1 Awareness have some wonderful news that we would like to share with you.   Internal Promotion Glyn Cockaday joined our charity Board 3 years ago as our Facebook Admin.  Glyn not only excelled at this role, but started to help with
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Lela Lackey receives an Alpha-1 Foundation Grant

July 30, 2019 Congratulations to Lela Lackey (postdoc, Alain Laederach’s lab) for receiving a grant from “Alpha-1 Foundation” to study the effects of non-coding mutations on the expression of the Alpha-1-antitrypsin protein. Dr. Lackey will investiga
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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.