01/2023: Alpha1 Deutschland eV wishes you a happy new year!

„Dare to explore new paths while preserving what has proven successful“ – our motto for 2023. And so we're starting the year with a proven partnership, our collaboration with Grifols. This led, among other things, to the idea of a webinar on the topic of…„Sleep & Resilience – an underestimated source of energy“Perhaps a new path for all of us, because after the presentations you can relax and ease into the evening with practical exercises.”.

New approaches that have proven successful include our podcasts, which we produce in cooperation with CSL Behring. It's a new podcast titled "„Our daily bread? – Nutrition in Alpha-1 Antitrypsin Deficiency“Appeared. Here, Dr. Erickson talks about a topic that concerns many people after the Christmas holidays.

Have a listen:

Something else to listen to or watch: Our online lung exercise trainer, Peter Kukry, from the Dortmund Lung Self-Help Group, gives tips in a webinar for people with lung conditions on how they can help themselves. In a discussion with Dr. Clemens Kelbel, Director of the Westphalian Pneumological Clinics and Head of the Department of Pneumology, Intensive Care Medicine, and Sleep Medicine, we learn what we should consider and what we can do for ourselves. The discussion is available as a recording on YouTube (unfortunately, the audio is sometimes choppy, but still worth watching).

GSK and Wave Life Sciences announce collaboration to advance the discovery and development of oligonucleotide therapeutics focusing on novel genetic targets.

Sounds complicated? It is! If you'd like to know more, read the press release from GSK (GlaxoSmithKline). The important thing for us is that this grants GSK the exclusive global license for Wave's preclinical, potentially world-class RNA editing program WVE-006 for the treatment of alpha-1 antitrypsin deficiency (according to the press release).

Whenever a new major pharmaceutical company begins researching a cure for AATD, it gives us a small, additional glimmer of hope. However, keep in mind that it will take years before we see initial results, and unfortunately, many (failed) attempts will be necessary before we can benefit. But without attempts, there would be no chance of ever finding a cure.

Alpha-1 Global 5th Research Conference & 8th Patient Congress

We hope to gain new insights into the current state of research from the events being held by the American Alpha1 Foundation in April. We will report everything we learn there at our members' meeting and in the next journal, and will certainly also incorporate some of it into a newsletter. If you are also interested in the event, you can find information about it on our website.

Aside from that:

Arrowhead and Takeda announce topline results from the SEQUOIA Phase 2 study of fazirsiran in patients with liver disease associated with alpha-1 antitrypsin deficiency. These data are consistent with the results of the open-label Phase 2 AROAAT-2002 study, previously published in New England Journal of Medicine  have been published. We will publish more information about the planned Phase 3 shortly and are in close contact with Prof. Strnad.

• We liked the special COPD and nutrition issue of the Patient Library so much that we included it in our members' journals. If you didn't receive one, You can also download the booklet from our website..Or directly on the page the patient library.
• Despite the registration deadline for the Alpha1 information day with members' meeting and celebration (22nd anniversary), you can still register if you haven't already done so. This early registration date is due to the hotel's deadlines for returning rooms. After the registration deadline, we can no longer guarantee participation, but there's a very good chance we can still accommodate you. A brief update: we have more registrations (almost 300 people) than ever before, and we're expecting more presentations, more time for networking, getting to know each other, and simply more time to enjoy ourselves. Lots of new and tried-and-tested things!