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.

 

We have 2 exciting events coming this year for those who like the outdoors.  Please take a look at them and if you are interested in a free ticket, let us know.

ASICS London 10k (British 10K Run)

The British 10K is well known as one of the world’s greatest road race route. Passing through the heart of London you’ll see many of the capital’s most iconic landmarks.

Details

Date: Sunday 5th July 2020

Location: London

Event Category: Run

Distance: 10K (6.22 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £200

Amount of tickets we have remaining: 5

To learn more, click here.

TrekFest The Beacons 2020

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

Details

Date: Saturday 19th September 2020

Location:  Brecon Showground, Wales

Event Category: Hike

Distance: 25K (15.5 miles)  or 50K (31 miles)

Cost for a ticket: Free

Minimum Fundraising Pledge: £250 for the 25k   or £310 for the 50k

To learn more, click here.


 Latest News

 

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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Dicerna™ to Begin Clinical Development of DCR-A1AT for Treatment of Patients with Alpha-1 Antitrypsin Deficiency-Associated Liver Disease

2nd July 2019 CAMBRIDGE, Mass.–(BUSINESS WIRE)–Jul. 2, 2019– DicernaTMPharmaceuticals, Inc. (Nasdaq: DRNA) (the “Company” or “Dicerna”), a leading developer of ribonucleic acid interference (RNAi) therapies, today announced it submi
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All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease

All UK sites now open for new drug trial (Astraeus Study) to explore oral compound for Alpha-1 lung disease 8 clinical trial sites now open across the UK for ASTRAEUS Study Alpha-1 Awareness and Alpha-1 UK Support Group are pleased to note that all e
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Arrowhead Preclinical Data Demonstrates RNAi Therapy Prevents and Reverses Alpha-1 Liver Disease at The International Liver Congress

Apr 12, 2019 PASADENA, Calif. –(BUSINESS WIRE)–Apr. 12, 2019– Arrowhead Pharmaceuticals Inc. (NASDAQ: ARWR) today presented preclinical data at The International Liver Congress™ 2019 (ILC), the annual meeting of the European
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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.