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email forum - by joining the group e-mail forum you will be in contact with Alpha patients, their families, carers and friends living throughout the UK and overseas. We are a friendly group, and between us we have a wealth of knowledge and experience to share. There is always someone to help with any worries or queries you might have.

What is Alpha-1 Antitrypsin Deficiency?

Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream. AAT is an enzyme produced in the liver to help protect the tissues of the body during infections. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

Newsletter Autumn 2019 Now Available


Autumn 2019 Alpha-1 UK Newsletter Issue 18
Now Available

Contains 28 pages full of News and Information including:

Charity Annual Update, Members Stories and much more

 

Top Story

Annual Social Gathering & Information Day 2020

As many of our veteran members will know we have held our annual event in September every year for over 20 years (yes, we’ve really been supporting alpha’s and their families for that long) and this year is no exception. However, despite historically hosting their annual meeting in the Spring, Alpha-1 Awareness decided to schedule theirs at the very same weekend as us. This is especially awkward for those of you who are members of both groups and don’t want to miss out on either meeting. With that in mind, and with the additional challenge of COVID meaning that meetings now have to be virtual events, we have carefully considered how we can best serve the alpha-1 community and our members most effectively until the COVID-related restrictions ease off.

Our Trustee Tanya Jones started to host virtual coffee mornings/evenings during the COVID lockdown and many of our members took advantage of getting together for a chat, so far we have hosted over 30 of these meetings. Hearing from you during these sessions has given us insight into what may be important to you, and we have considered what we can do to try and help especially as winter approaches.

We are very excited to announce that the Alpha-1 UK Support will be holding the following virtual events in the coming weeks instead of our Annual Social Gathering & Information Day this year:

Chair Yoga – weekly lunchtime sessions
This event will be led by Ali Graves who is a fully qualified yoga teacher

Managing Your Mental Health & Wellbeing
This event will be led by Matthew Vickers a Professional Psychotherapist

Alpha-1 UK Support Research Conference
This event will review current research activities and clinical trials internationally and within the UK. There will be presentations from multiple companies followed by a live Q&A session Chaired by Professor David Parr.

We will announce further details for each event independently in our Facebook Group and via email to our members.

 

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Latest News

Annual Meeting Update 2020
21 Sep 2020 00:00


Annual Social Gathering & Information Day 2020
  As many of our veteran members will know we have held our annual event in September every ye [ ... ]

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Coronavirus (COVID-19) 27th April 2020
27 Apr 2020 12:00


Alpha-1 coronavirus (COVID-19) update as of the 27th April 2020:

Further to the previous guidance relating to the risks of COVID-19 that was posted [ ... ]

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Coronavirus (COVID-19) April
14 Apr 2020 12:00


Alpha-1 coronavirus (COVID-19) update as of the 8th April 2020:

Further to the previous guidance relating to the risks of COVID-19 that was posted  [ ... ]

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Coronavirus (COVID-19) (2)
11 Mar 2020 12:00


COVID-19 INFORMATION FOR ALPHA'S
The following is a statement from Professor David Parr, Univsersity Hospitals Coventry & Warwickshire  Infor [ ... ]

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