First newsletter in the anniversary year

Alpha1 Germany eV.

This is our first newsletter in our anniversary year – 20 years of Alpha1 Germany! Even though the coming year won't be entirely easy, we are confident that things are looking up. The number of infections is declining slightly, the first people have been vaccinated, and we hope to see you again in September for our information day and anniversary celebration.

Important to know, especially for younger people who are calculating that they might not be vaccinated by September: STIKO vaccination recommendation This has been revised. Excerpt from the press release of the Federal Government Commissioner for Nursing Care dated January 11, 2021.

„"Because with this, the STIKO now also includes people with rare, severe diseases The focus is on pre-existing conditions, specifically those for which previously insufficient scientific evidence regarding the course of a COVID-19 disease is present. For this group of people, the possibility of individual case decisions is not available. once again clearly emphasized […]“

The new revision (full version) of the vaccination recommendation can be found here. here. How this can then proceed will be explained in the Medical Journal As described, an informal certificate is sufficient.

More information on the Corona vaccination

• An overview of the Covid-19 vaccination is provided by the Respiratory League in a Flyer (recently revised).
• You can also find a „Fact check Corona IV: Corona vaccination“ on YouTube. Or watch
• „Mechanism of action and potential risks of mRNA vaccines against COVID-19“ on YouTube.
• And for those who want to know how fast it's progressing: The star presents a Vaccination monitorAn interactive map shows how many people have already been vaccinated in each federal state.

Here, someone affected by Alpha1 describes how she survived Covid-19. Their conclusion: "Fresh air, exercise, and even a little overexertion are only good for our body and mind, promoting both resilience and willpower to maintain health. This prevents the condition from worsening than it often already is."„

You can find another report on our Homepage.

Digital Healthcare

The new year also brings some changes for digital healthcare, as Mr. Heimann already reported in the last journal. The Digital Guide provides a brief and concise overview. generally and secondly, specifically for electronic patient record.

Tips for 2021

Ours too helpful tips – submitted again by Uwe and Marion Deter – deal with innovations in 2021:

• Whether physiotherapy, occupational therapy, or speech therapy: The regulations for prescribing therapeutic treatments are becoming increasingly complex and difficult to understand. Therefore, the Federal Joint Committee has fundamentally revised the Therapeutic Treatment Guidelines. The new regulations have been in effect since January 1, 2021. Comprehensive information can be found at [website address missing]. National Association of Statutory Health Insurance Physicians. Moreover, well explained in the Brochure Practical Knowledge, which is particularly interesting for us from page 13 onwards with the topic of physiotherapy.
• Those with a care level rating are entitled to have their health insurance or long-term care insurance cover €60 per month during the pandemic, instead of the previous €40, for care supplies (bed pads, disinfectants for surfaces and hands, disposable gloves, protective aprons, face masks). Details below. here.
• The Axis also gave us another tip regarding FFP2 protective masks: Here is the Link to the regulation, The regulation, based on which the health insurance companies, on behalf of the Federal Ministry of Health (BMG), send the vouchers for protective masks to the various eligible groups, also specifies who is entitled to the free masks.
  An addition to the information on FFP2 masks from Achse: If the person concerned is entitled to care benefits, it is worth asking the relevant care insurance fund whether they will cover the costs of the FFP2 masks within the budget for "consumable care supplies".

Patient conference on bronchiectasis

Many Events events are still taking place online – check our website regularly. Events calendar. We would particularly like to draw your attention to an event specifically for Alphas with bronchiectasis:

This is a free, virtual event aimed at people with bronchiectasis and their friends and family, but open to anyone interested in learning more about this condition. There will be patient-focused presentations from experts and patients with lived experience from across Europe on the following topics:

• Fundamentals of bronchiectasis
• Treatment and self-management
• Latest research
• COVID-19

You can find more information on the ELF website. The presentations will be given in English, but sessions are planned where participants can ask questions of the experts in their own language. The day is being planned by the ELF, members of the ELF Bronchiectasis Patient Advisory Group, and clinicians from EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration).

ALTA Research Prize 2021

The year also brings other good things: Despite the pandemic, Grifols also praises the ALTA Research Prize with 2 x €50,000 for outstanding research achievements by young scientists on the topic of Alpha1-Antitrypsin.

A personal note

Our last newsletter still contained the first version of the video from the Alpha1 Liver Team at RWTH Aachen University, which is no longer valid. Here is the... Link to the final video.

As part of the anniversary celebrations, we would like to share your stories, fates, or beacons of hope.
Do you have a story to tell? Or perhaps you have a good tip for us?
Do you have any questions or suggestions?

Then write us an email at erfahrungen@alpha1-deutschland.org