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We are the oldest registered charity in England/Wales as well as the oldest in Scotland who are here to support those who are affected with Alpha-1 Antitrypsin Deficiency. Not only do we support those affected, their families and friends, we also bring awareness of the condition to medical professionals and the general public. Our charity is run by non-paid volunteers who are either affected by Alpha-1 or have a family member who is. We have a real passion for the charity and for supporting people who are affected, their families and friends.

We produce booklets which people can view and download digitally and even request that a set be sent to them in the post for free (UK residents only)Click here to go to our booklet area on our main website.

While we have a website (www.alpha1.uk), we created this website so that people can see news about Alpha-1 from around the world in a quick and easy way.
If you would like to ask us a question about Alpha-1, you can use the 'Contact Us' form.

Charity News

Our Chairman to step down

On the 26th September 2021, our chairman Alan Wooler is to step down due to personal commitments. For those who are not aware,

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. 

Can you help name the new Baby Bears?

Exciting news!   Alphie and Tripsy are delighted to welcome a new sister and brother to their Alpha family.  But they now need

Alpha-1 in the Press

Man Living with Rare Disorder Making Plea to Government for Treatment Approval

A man living with a rare and degenerative disorder is making a heartfelt plea to officials to get approved for a treatment that

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

New blood test predicts which COVID-19 patients will develop severe infection

18th October 2020  Professor Gerry McElvaney (left), the study’s senior author and a consultant in Beaumont Hospital, and Professor Ger Curley (right) stand

Other Alpha-1 Group’s News

NEW IRISH ALPHA-1 RESEARCH IN 2020

Irish Alpha-1 research published last month in “Thorax”, one of the world’s leading respiratory medicine journals, highlights the crucial importance of patient registries for

AlphaNet Announces New Appointment to the Board of Directors

AlphaNet is pleased to announce the appointment of Dell Witcher to the board of directors, effective May 14, 2020. “Dell’s expertise and involvement

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

 

 

 

General Research

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

New blood test predicts which COVID-19 patients will develop severe infection

18th October 2020  Professor Gerry McElvaney (left), the study’s senior author and a consultant in Beaumont Hospital, and Professor Ger Curley (right) stand

Largest Source of AATD Stem Cells Collected

Researchers from the Center for Regenerative Medicine (CReM) have assembled the largest repository of patient derived stem cells (iPSCs) from patients with alpha-1

Treatment Research & Trials

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

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

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. 

Treatments

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,

CSL Behring lift their precautionary distribution hold on ZEMAIRA®

The Alpha-1 Foundation received the following communication update from CSL Behring, regarding Zemaira®, their prescription drug for augmentation therapy for the treatment of

Diplomat signs exclusive practice-based infusion agreement with Allergy Partners

FLINT, Mich., Aug. 8, 2019 /PRNewswire/ — Diplomat Pharmacy, Inc. (NYSE: DPLO), is pleased to announce an exclusive agreement between Diplomat and Allergy Partners, P.A., to manage in-office

 

 

 

Help and Advice

European Lung Foundation advise on planning a flight

ELF (European Lung Foundation) has produced a poster to help make people with lung conditions aware of the steps they should take when

Other Articles

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

Health Benefits of Air Pollution Reduction

Reducing air pollution improves people’s health very quickly, reports a paper from the Forum of International Respiratory Societies (FIRS). Air pollution is when

Michigan becomes first state to ban flavored e-cigarettes

Michigan becomes the first state to ban flavored e-cigarettes for minors starting today. Governor Gretchen Whitmer has been making a push to get nicotine out

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