society Tag

01/11/2019

DGHO annual meeting in Berlin

This year's annual meeting of the German, Austrian and Swiss Societies for Hematology and Medical Oncology - in short "DGHO Meeting" - took place from October 11-14, 2019 in Berlin and again offered numerous lectures, including on aplastic anaemia and PNH. In the case of aplastic anaemia, it wasWEITER
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
06/10/2019

We need you!

Our association is involved in a wide variety of areas - we provide information and advice to patients and their relatives, offer local group meetings, and operate information stands at events and conferencesWEITER
28/09/2019

Foundation of the PNH Global Alliance

In June, representatives of international PNH patient organisations met in Amsterdam to found the PNH Global Alliance. In addition to us, the lichterzellen foundation from Germany was represented. Colleagues from Great Britain, the Netherlands, France and Spain were on site, while representatives from Canada and Russia were connected via video telephony. The goals of the Global Alliance include WEITER
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

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!

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 .

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.

WEITER
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