Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2024.
The Alpha1 Germany management team meeting took place from August 23rd to 25th, 2024 at the MERCURE Hotel Hannover Medical Park. A weekend full of intensive discussions, new projects, and groundbreaking decisions has come to an end.
Patient interests in focus
After introductions, which included a brief report from each self-help group, we once again welcomed Johann Frankl, delegate from the Alpha-1 organization in Austria (his impressions are described on page 17). It was already clear on Friday that topics such as oxygen supply are central to patients and deserve more attention. We urgently need more information on our website and would also like a video on this topic for our YouTube channel. In line with this, we are offering a seminar with Dr. Sommerwerck at our 2025 information day.
Questions about skin problems related to Alpha-1 are frequent, but few can answer them because there is little data available (except for panniculitis). The idea from the Franconian self-help group (SHG Franken) of distributing flyers to doctors' offices is to be expanded through cooperation with sales representatives from CSL and Grifols. This offers great potential for introducing the groups and the work of the association.
The challenges of the rehabilitation project were discussed at length. Many patients require support with applications, particularly in combination with substitution therapy during rehabilitation. We will provide all patients with further information on this after the online group leader meeting at the beginning of December, where we will discuss a summary of the most important points regarding rehabilitation with our advisory board member, Nicole Scherhag.
A new project desired for 2025 is an introduction to the system of care levels and their practical significance.
This project aims to provide a comprehensive overview of the care level system as used by long-term care insurance in Germany. The goal is to offer a detailed insight into the principles, procedures, and benefits associated with these care levels. We will examine both the theoretical aspects and the practical application in the daily lives of people requiring care.
As a result, we hope to provide easily understandable, well-founded information that serves as a guide for those affected and for professionals. This will enable those in need of care and their relatives to receive optimal support and to use long-term care insurance benefits in a targeted manner.
Project Substitution: Challenges and Solutions
Substitution therapy remains a central topic. Questions regarding liability, risks associated with home substitution, and care during holidays were discussed. The financial aspects were also addressed: group prescriptions could reduce administrative costs but require substantial upfront payments. Education about port use and proper placement were further important considerations.
Together we would like to continue exploring this topic, first gathering the information and later making it available on the homepage or in print.
New projects and public relations
In addition to the proposal to establish a new project on the topic of care levels, the public perception of Alpha-1 was discussed. How can we raise awareness of our plasma donation video? Suggestions range from health magazines and radio features to creative approaches such as car magnets with QR codes and eye-catching displays. The goal is to link Alpha-1 to tangible symptoms like shortness of breath in order to reach more people.
A highlight for 2025: We are planning to participate in the Rare Diseases Run from February 24th to March 2nd. Everyone interested – whether walking, running or in a wheelchair – is welcome.
On Saturday, we attended the Patient Day at Hannover Medical School together. Afterwards, we were quite overwhelmed by the amount of information and had plenty to talk about. Special thanks go to the organizers, Dr. Annegret Zurawski and Inga Kwapniewska, as well as our advisor, Professor Sabina Janciauskiene, who continued to answer many questions late into the evening and remained passionately committed to our research. The full report on Patient Day can be found on our website under Event Reports.
Organizational changes and decisions
On Sunday, important organizational points were on the agenda, including promoting the regional days, the activities of the group leaders (including a tiered action plan), the use and modernization of the journal, the organization of the general assembly meetings by individual groups to relieve the board, and our financing. In addition to a general assembly survey regarding a membership fee increase, new approaches to fundraising were presented, resulting in a preliminary collection of ideas for potential projects.
Support from the EUTB
Another helpful tip was the supplementary independent participation advice service (EUTB). It offers valuable support with applications, for example, for disability pensions or rehabilitation services. You can find more information in our glossary or on the website. www.teilhabeberatung.de.
Conclusion: The 2024 GL meeting generated numerous ideas and concrete measures to better support the concerns of our members. Whether in patient care, public relations, or organization: Together, we move into the future with renewed strength. We thank all participants for their dedicated contributions!
