Latest News

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
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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
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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
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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
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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
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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
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