On this page you’ll find the latest news, links to our newsletters on Substack and other interesting publications.
11 October, 2025
Videos of our webinar
Our webinar that took place in October 2025 was a great success and fortunately we have recorded it.
We have split the video in separate parts for each speaker, so they can be easily located and watched on our YouTube-channel.
Click here for the first video, with an introduction by our founder, Frans Frielink, and a presentation by professor Gerry McElvany, called “Delineating the risk of lung disease in MZ alpha-1 antitrypsin deficiency”.
Click here for the second video, in which Frans Frielink shares his insights on Alpha-1 MZ liver-related morbidities and mechanics.
Click here to watch the third video with dr. Laura Bonebrake, OB/gynaecologist, who gives a brief overview of intrahepatic cholestasis of pregnancy (ICP).
Click here for video 4:
Alpha-1 DNA explained by Reinoud Doeschot , and about the use of certain medications by Alpha1 MZ’s.
Click here to watch video 5, in which Jenny Shoskes, PharmD and Director of Global Clinical Development at BioMarin, gives an overview of their Alpha 1 BMN 349 program.
15 August, 2025
Study Invitations for Qualitative Interviews in AATD
There is a research opportunity about Alpha-1 antitrypsin deficiency (AATD) liver disease, which includes both MZ and ZZ patients.
Global Perspectives and Evidera, a scientific research company, are conducting research on behalf of a pharmaceutical company to learn about patient perspectives on AATD liver disease.
Project details:
• Up to two web-assisted interviews over a 2-to-3-month period
• Interviews lasting either 60 or 90 minutes
• Financial compensation for completing each interview.
To be eligible, patients must:
• Have a diagnosis of AATD liver disease
• Be aged 18 years or older
• Be willing to give informed consent to take part in the study
Please be aware that meeting these requirements does not guarantee selection for the study.If you are interested in more information about this study, please contact:
marieta.reppa@global-perspectives.com
27 June, 2025
Alpha1 MZ Foundation on Substack
Until now, we’ve sent our weekly newsletters via an e-mail service connected to this website. Over the past few months, we’ve welcomed so many new subscribers that this option is no longer feasible. We’ve reached the milestone of 500 subscribers, which means we had to look for other possibilities to distribute our newsletters.
We all thought Substack would be an excellent choice to keep you updated on the latest developments for the Alpha MZ population.
From now on, you’ll receive our newsletter directly in your inbox. You can also log in to our Substack website to read the full archives and other posts as they’re published.
So feel free to subscribe to our publications and tell your friends, family and fellow Alpha’s about us.