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.

 

News

We have a separate site at www.alpha1.news which reports on all Alpha-1 related news from around the world.  If you would like to learn what is happening with Treatments, Research, Alpha-1 Mentions in the press, Other World group’s news and our own charity news, then you need to take a look at our news website.


Alpha-1 in the time of COVID-19

We understand that this is a very concerning time for Alpha’s, and we’re here to provide you as much information and support as we have within a rapidly changing context. To find out more about coronavirus and Alpha-1 antitrypsin deficiency, please visit our page here. We strive to update this page as often as we can, given evolving developments and advice, so please check back frequently.

“MERS Coronavirus Particles” by National Institutes of Health (NIH) is licensed under CC BY-NC 2.0 

18th May 2020 – If you are a parent, you are probably concerned over the recent announcement from the government about re-opening the schools.  Should your child go back now?  Sadly nobody is able to give you a Yes or No answer.  You may find a small article we have titled “A Personal View of a Teacher and Mum about reopening of schools and Alpha” which was written by one of our Trustees useful.


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 25th July 2021

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 2021

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 18th September 2021

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

 

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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
Read More

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.