offers

06/03/2022

Bringing together AA/PNH patients

Photo: Guido Grochowski_Adobe Stock

 

Most people who suffer from a rare disease such as aplastic anaemia (AA) or PNH are initially alone with this diagnosis: Since only a few thousand people in Germany suffer from AA and PNH , hardly anyone of their family and friends has ever heard of these diseases, let alone suffers from them themselves. This often makes it difficult for those affected to exchange questions, worries, tips and experiences.

At this point, we as an association, together with the lichterzellen foundation , would like to bring together locally as many AA and PNH patients and relatives as possible , so that they do not only meet on the internet, but maybe soon face to face with other affected people in their vicinity. We keep a list of patients and relatives in which you can register if you wish. Please fill out this form and send it to us.

WEITER
By admin
30/09/2021

Interview on the work of self-help

Interview of the Cancer Survivor initiative with Rainer Göbel about self-help and blood cancerRainer Göbel in an interview with Stephan Pregizer © Cancer Survivor
 

Some people may still have the idea that self-help is nothing more than sitting in a circle of chairs and only talking or even moaning about the topic in which the corresponding self-help group is concerned, in our case about illnesses.

In fact, one of our core tasks is to enable patients and their relatives to exchange ideas with one another, be it in the said circle of chairs, when visiting a restaurant together, in virtual meetings or in some other way. But our range of tasks is diverse and we offer much more than just an exchange. We publish information material, have information stands at events, attend congresses and are involved in (political) lobbying. Rainer Göbel, member of our board and chairman of our umbrella association German Leukemia & Lymphoma Aid (DLH), gives an insight into the work of self-help using the example of blood cancer in an interview with Stephan Pregizer from the Cancer Survivor initiative - take a look for yourself:

to the video

   
By Ulrike
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
19/12/2020

Virtual meetings

Due to the risks of the SARS-CoV-2 pandemic we do not meet face-to-face until further notice. However we want to keep in touch with you and offer virtual meetings in German every third Thursday of the month at 7 pm. New participants are welcome to join! The number of participants is limited, therefore please register by sending us an email to info@aa-pnh.org.

You will receive the login details afterwards. We look forward to meeting you!

Privacy comment: We use Microsoft Teams for our virtual meetings which does not fully comply with the GDPR. As with all US-based applications, it may be that some of the participants' personal data is transferred beyond the legal boundaries of the European Union.

By admin
08/10/2019

11th Essen patient seminar successful

On September 28, 2019, the Essen University Hospital held its 11th patient and family seminar on PNH and AA. Under the direction of Prof Dr Ulrich Dührsen and PD Dr Alexander Röth as usual a varied and exciting program was offered that left enough space for breaks and exchanges between the more than 200 participants. WEITER
By Ulrike
08/09/2019

Letter of support

Partial illustration of a severely disabled ID card Do you have problems with your severely disabled ID? Our umbrella organization ACHSE (Allianz Chronic Seltener Erkrankungen eV) has written a letter of support to the responsible office *, which refers to the difficulties in determining the degree of disability (GdB)WEITER
By Ulrike
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