SHG Alpha-1 Berlin-Brandenburg meeting on February 14, 2020
Author
Petra Netzel
Our group leader Peter Hübner wrote in the invitation: “Even though it feels like we are already in the middle of the new year, we hope you have had a good start and would like to wish you all the best, especially good health for 2020!“
Almost all of our members attended the meeting; unfortunately, some members were unable to participate in the first meeting of our self-help group due to illness.
Before the discussions began, our guest, Ms. Anje B., who lives in Berlin, introduced herself to our group. Ms. B. is interested in a self-help group for Alpha 1, as she has been diagnosed with an as-yet-undefined Alpha 1 condition.
Following this, a summary was given of a specialist forum organized by the Tagesspiegel newspaper on the topic: "Rare Diseases: Empowering Small Numbers," which our group leader was able to attend on February 13, 2020. The written report is interesting; we hope to make it available soon on our support group's website at Alpha 1 Germany, so that other interested parties can also read it.
Our self-help group is interested in another event organized by AOK/NORD/OST on March 5, 2020, on the topic of volunteering and its work. The group leader and Ms. Rosi K. will be present. Ms. Netzel informed interested parties that the Märkische Sozialverein e.V. (Märkische Social Association) is hosting a self-help day on Saturday, February 29, 2020, in Oranienburg, with the theme: "Giving a Voice to the Rare.".
All group members present received the data protection information and each member signed the data protection form. Mr. Hübner will forward these forms to board member Thomas Heimann.
Ask:
Is it still possible to have liver function tests performed at Campus Benjamin Franklin, Charité, Hindenburgdamm 30, in 12203 Berlin Steglitz?
Answer: Yes, appointments can be made via email. gastro-ambulanz@charite.de or by telephone via direct dial 0308445 4603.
The information day in Göttingen was mentioned, as well as the registration for participation in the liver study.
It was decided that the 2nd meeting of the self-help group in May would be cancelled and rescheduled for June 5th, 2020.
The discussions among ourselves were interesting, and we members realized that we make a good team. Let's keep it that way!
Signed: Petra Netzel
