Marion Wilkens, as published in Alpha1 Journal 2/2015

The Alpha1 group leader meeting took place in Erlangen from September 25th to 27th, 2015.

After an enjoyable start on Friday, we had a full program on Saturday. Right after the welcome, there were organizational matters to address. The introductions revealed that there is no typical group. Each group has a different size and working style, and the number of meetings varies considerably. The type and execution of events also differ greatly. Many members responded to the question about future plans with skepticism. Here, we need to work on exchanging concepts and ideas within the groups and disseminating information. News that the group leaders should share with their groups:

• We are supporting the product launch of "Respreeza" by CSL on October 15, 2015. We welcome the competition and are eager to see how the market will react. We remain open and neutral to all parties, provided our members benefit.
• We are supporting the further development of „AlphaCare“ by the company Grifols.
• We are in dialogue with Alpha1 Global to create a database for holidaymakers who need a substitution in other countries.
• We are participating in research: Information about the liver study at the University of Aachen has been distributed. Dr. Strnad has offered to let the group leaders contact him once at least five Alphas have been assembled. He will then come to a group meeting to conduct the examination.
• We were in Hattingen and were able to explain what distinguishes us as an "Alpha1" association from the COPD group. We gained many good ideas and made many contacts that we will incorporate into our association's work, for example, the contact with "PulmonX," who would also be happy to attend a group meeting upon request.
• Last but not least, it's important to us to fill the new "Useful Information" section on our homepage with plenty of content. It currently consists of four subcategories: Oxygen, Pulmonary Exercise, COPD, and Traveling with Alpha-1. It's worth taking a look, as you'll find a wealth of information there that can make everyday life easier. We'd also like to add a "From the Self-Help Groups" section and need the help of all groups and group leaders for this. It's also essential that group events are posted online well in advance; group leaders are encouraged to contribute to this effort.

Rights and responsibilities of a group leader:
It was first pointed out that the association consists of three important pillars: first, the members, and then the two equally important pillars: doctors and self-help groups. Without a doctor, we patients are lost, but without further information and mutual support, life would certainly be significantly more difficult for our members. Self-help groups are self-organized associations of people who share a common problem or concern and want to take action together. Typical problems include coping with chronic or rare diseases, life crises, or challenging social situations. The number of self-help groups in Germany is estimated at 70,000 to 100,000. According to a 2003 telephone health survey conducted by the Robert Koch Institute, approximately 9 percent of the adult population in Germany had participated in a self-help group at some point. Further information on self-help groups can be found online at Wikipedia: https://de.wikipedia.org/wiki/Selbsthilfegruppe
To provide ourselves with a guideline and to give new group leaders an overview, we created and have now approved a group leader information sheet last year. The information was distributed in advance.

After the first break, we received training on oxygen and hygiene. The speaker, Ursula Krütt-Bockemühl, is herself a long-time oxygen patient, an advisor to Alpha1 Germany e.V., an honorary board member of LOT, and has her own website:

http://copd-info.com/news.php

The lecture will be reported on in the following pages of the journal.

After lunch, the next training session followed, this time led by Michaela Frisch, head of therapy at the Espan Clinic in Bad Dürrheim, who is also an advisor to Alpha1 Germany e.V., a board member of the Lung Sports Working Group, and whose work is now also featured in a comic strip. In the late afternoon, we had time for further topics related to the groups and were able to discuss goals and future visions. "What more can I do as a group leader?" was one of the questions. Many answers emerged from our lively exchange.
How will we handle self-help group events in the future, and how can I get support or funding? Group leaders will receive detailed documentation separately; the most important points are:

• Each self-help group can apply for advance funding from Alpha1 Germany for one event per year. Alpha1 Germany supports the groups with €20 per member.
• Pharmaceutical companies can invite patients to an event.

Good ideas for events organized by the self-help groups came from within their own ranks.

Of course, we also looked to the future. We at Alpha1 Germany would like more feedback, more exchange about events, more advertising on our website for upcoming events, more suggestions for group leader meetings, and more promotion by group leaders within their own networks. Group leaders should continue to explore what's offered in their area that might be of interest to Alphas.
Our shared goal is to do everything possible to raise awareness of the disease, to make life and everyday routines a little easier for Alphas, and to gain more members.
With a mention of Bremen, we concluded the GL meeting at approximately 5 p.m. and enjoyed another evening of lively discussion.

Marion Wilkens, as published in Alpha1 Journal 2/2015.

Summaries of the presentations can also be found in Journal 2/2015.