Author
Marion Wilkens, as appeared in Alpha1 Journal 1/2025.
Everyone can – and should – contribute to ensuring that this valuable work can continue.
Dear readers, dear companions, dear Alphas,
The care and support of patients with alpha-1 antitrypsin deficiency depends not only on medical progress but also on the commitment of society – both in terms of ideas and finances. Securing donations and grants, in particular, is increasingly posing significant challenges for us.
Compared to other countries, the legal and ethical requirements for financing by the pharmaceutical industry are significantly stricter in Germany – a principle that we generally welcome.
For us as a patient organization, independence from industry and maximum transparency are not an option, but a matter of course.
At the same time, this path demands a great deal of commitment, creativity, and perseverance – especially when public and private donations are difficult to secure. For example, at the time of writing, we hadn't even received confirmation of whether – and if so, how much – public funding we would receive. The funding is for 2025, not 2026!
We are all the more grateful to everyone who supports us with great dedication despite these circumstances: committed donors, doctors who contribute their time, expertise and heart, as well as numerous supporters who are committed to Alpha-1.
This year we have sufficient funds (including from reserves) to complete all projects already underway. However, we would like to point out that we will need to rethink our approach in the coming years. Everyone can – and should – contribute to ensuring that this valuable work can continue.
Since the last journal, there's been a lot of positive news to report: informative events (reports from our information day in Bad Wildungen), new scientific projects just getting underway, and important findings that are paving the way for better therapies. This issue is also rounded out with reports from self-help groups, a reader's letter, an introduction to a supporter, and much more.
Thank you for being on our side.
Sincerely, Marion Wilkens
