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.
Below are 2 events that are happening in 2019, if you are interested in doing a run in London or a hike in Derbyshire, click on their links to learn more.

British 10K Run

Date: Sunday 21st July 2019
Location: London

The British 10K is well known as the world’s greatest road race route. Passing through the heart of London you’ll see many of the capital’s most iconic landmarks.  You’ll also run past the True Geographical Centre of London, down closed Regent Street, the Strand and Embankment, and get the best view across the river of the London Eye.

If you are interested in running in this race for free, click here to learn more.

TrekFest ~ The Peaks

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

TrekFest is the UK’s ultimate trekking challenge. Take on an epic trek through open countryside in the Peak District National Park, Derbyshire walking side by side with hundreds of like-minded individuals all with the same goal in mind – to cross the finish line.

If you would like to take this trek on along with us, click here to learn more.

Fundraisers

Please take a moment to read what our fundraisers are doing and if you are able, to donate something to them.

Pauline Laybourne

“On 17 August 2019, my husband Colin Laybourne and our friend Rae Davies will be walking along the Llanberis Path to the summit of Snowdon, North Wales to raise much needed money and awareness of Alpha 1 Antitrypsin Deficiency (AATD). “

 

To learn more, click here.

 

 


 Latest News

 

The British Liver Trust and Genetic Alliance UK meetings

The British Liver Trust and Genetic Alliance UK are running a support group in Scotland for Rare/Genetic Liver Conditions and have contacted us to see if any of our members who live in or near Edinburgh would be interested in going along to their mee
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Early Phase Clinical Trial

Would you consider taking part in an early phase Clinical Trial? The Queen Elizabeth Hospital in Birmingham is running a phase I clinical trial to determine whether a new investigational drug could help to prevent liver damage by reducing the liver d
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Arrowhead’s ARC-AAT Granted EMA Orphan Drug Designation

Jan 19, 2016 PASADENA, Calif.–(BUSINESS WIRE)– Arrowhead Research Corporation (NASDAQ: ARWR), a biopharmaceutical company developing targeted RNAi therapeutics, today announced that theEuropean Medicines Agency (EMA) granted Orphan Drug D
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Respreeza Marketing in Europe

CSL Behring announced today that the European Commission (EC) has granted marketing authorisation in all European Union (EU) member states for Respreeza® to treat patients with Alpha-1 antitrypsin deficiency (AATD). Respreeza®, a highly purified Alph
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Marketing Authorisation for Respreeza

CSL Behring announced today that the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) has recommended granting marketing authorisation for Respreeza®, a highly purified alpha-1 protein derived from human plasma, i
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Alpha-1 Clinics

The University Hospitals Coventry and Warwickshire have announced the establishment of the West Midlands Alpha-1 Antitrypsin Deficiency Service. The University Hospital Coventry already provides a multi-disciplinary service for patients with alpha-1
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British 10K London Run

Alpha 1 Awareness has once again secured 6 places in the British 10K Run to be held on Sunday 12th July 2015.  Three of the places have been filled, so that means we still have 3 places to fill. Can any of your family or friends take those places and
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Open Letter on Specialised Services

The Specialised Healthcare Alliance has today sent an open letter to the the PM and other political leaders expressing concerns about the provision of specialised services within the NHS.  Alpha-1 Awareness UK supports the work of the SHCA in improvi
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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.