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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
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
New Board members to our charity
Alpha-1 Awareness is a charity founded and run by volunteers to help bring awareness of AATD as well as give support to those
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
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.
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
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