society Tag

26/07/2021

our virtual group

Mug and Notebook (c) Chris Montgomery on Unsplash

We introduced our regular virtual meetings when we had to cancel our local group meetings due to the pandemic. We didn't know whether anyone would even be interested in sitting in front of the screen and talking to people who were initially unknown about their experiences with aplastic anaemia and PNH. It has now been almost a year since we held our first "trial meeting", and our virtual group has established itself as an independent group.

We are very happy about this and thank you for your encouragement, empathy and loyalty.

The meetings continue to take place every third Thursday of the month at 7 p.m. and we look forward to meeting "old friends" as well as new faces.

next meeting

By Ulrike
26/07/2021

Reminder: Survey on COVID-19 at AA and PNH

syringe with vials for vaccination © weyo

We read and hear it every day in the newspaper and on the radio - the COVID vaccination operation is in full swing and the number of first and second vaccinated people in Germany is steadily increasing. The proportion of vaccinated AA / PNH patients is also increasing, but whether and how they react to the vaccination compared to healthy people has not yet been scientifically recorded. Therefore we have created a short anonymous survey and ask you to tell us about your experience with vaccination. You can also take part in the survey if you cannot or do not want to be vaccinated or if you have contracted COVID-19. In doing so, you help to create a meaningful database to further improve the care of AA / PNH patients in the future.

We make the results of the survey available to science free of charge. Participating patients can also receive the evaluations on request.

The survey and further information can be found under the following link: https://aa-pnh.org/umfragen/irvap/de/ and in English at https://aa-pnh.org/umfragen/irvap/en/

Thank you for your help!

By Ulrike
27/04/2021

Collection of COVID-19 vaccination data from AA / PNH patients

Dear fellow AA and PNH patients,

Some time ago the first AA / PNH patients received their COVID-19 vaccination. But what effects do the vaccination or the COVID-19 disease have on our relatively small group of patients? In order to collect knowledge about this and to be able to make the results of science available for better care in the future, we are carrying out an international survey in cooperation with the Lichter Zellen foundation . The data is collected completely anonymously, i.e. without any personal or personally identifiable information. There is no way that your data can be assigned to you afterwards.

If you would like to receive further information or results about this survey or the AA / PNH register from us, you can enter your e-mail address after the survey. This is saved separately from the survey data.

The survey can be accessed under the following link: https://aa-pnh.org/umfragen/irvap/de/

Thank you in advance for your participation! You are helping all AA and PNH patients.

We would be delighted if, after answering the survey, you would inform other AA / PNH patients about it. If you have any questions or suggestions, please contact us by email at info (at) aa-pnh.de .

By Ulrike
11/03/2021

Introducing our addition to social media

Dear readers,

Since February 2021 I have been able to support the team of the Aplastic Anemia & PNH eV association in their work and would like to introduce myself to you below. My name is Katharina von Villiez and I am 25 years old. I have been studying medicine at the Charité, the university hospital in Berlin, since spring 2015 and am currently preparing for my written state examination.

The complexity and complexity of hematological diseases piqued my interest during my studies. In the hospital I got to know patients who suffer from various diseases of the blood, bone marrow or lymph glands and was able to gain insights into their individual stories, suffering and rays of light. For a month now I have had the opportunity to deal with this more intensively at the AA & PNH eV association: One of my tasks here is to write articles on important (current) topics on the association's website, especially with the association's chairwoman Ulrike Göbel. I also help with looking after the club's social media channels and with office work.

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By Ulrike
28/02/2021

20th anniversary of the association – a look back

Do you know this feeling? Wake up in the morning, maybe it smells like coffee, maybe breakfast is already ready and someone gives a bouquet of flowers or a first gift - someone calls and congratulates, a serenade at work or among friends and at the end of the day a nice, big one Celebrate with ... stop! It's February, it's the year 2021 and the corona pandemic still has a firm grip on our country and the world. The first lockdown was decided almost a year ago and it is very likely that you have already experienced it: It is your birthday in the pandemic .

Our association Aplastic Anemia & PNH eV also celebrated its birthday last week, namely its 20th anniversary. For known reasons, however, there was no question of “celebrating” in this context - even if we did not give up hope of being able to make up for it one day. Until then, however, we don't want to simply skip the club's anniversary: It's a wonderful opportunity to review the past 20 years. Perhaps you have been with us from the start, perhaps you only became aware of the association a few weeks ago: We are very pleased that you are part of it, we would like to thank you for your interest, your questions and suggestions, and we would like to take a look back at you invite you to 20 years of AA & PNH eV.

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By Ulrike
07/12/2020

Pandemic Impact Survey on AA / PNH Patients

In July / August 2020, under the leadership of Priv.-Doz. Dr. Fabian Beier started the first round of a survey to record the effects of the SARS-CoV-2 pandemic on AA and PNH patients in Germany. The focus was on the availability of information on COVID-19 and delays in treatments. We were very pleased that the lichterzellen foundation and our association were included in the design of the survey.
The evaluation of the first round of questions showed that around 20% of the respondents had little or no access toREAD MORE
By Ulrike
12/04/2020

AA & PNH eV on Facebook

Our association Aplastic Anemia & PNH eV, AA & PNH eV for short, now has its own page on Facebook ! There we present the association and its history. We also point out events such as group meetings and patient days as well as information on the diseases and current topics.


AA & PNH eV - Front page Facebook READ MORE
By Ulrike
08/03/2020

DLH member annual meeting 2020


On 7th and 8th March 2020 the annual general meeting of members (MJHV) of our umbrella association, the German Leukemia & Lymphoma Aid eV (DLH) took place in Königswinter. Since the spread of the SARS-CoV-2 virus only affected a manageable number of people and the district health department had not a single case, the event could be carried out as planned.

The first day was dedicated to the advanced training of the group leaders present. 4 workshops were offered:

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By Ulrike
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