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Welcome to our website!

We provide information about Aplastic Anaemia and PNH and our offers for patients and relatives. If you have any questions or comments, please feel free to contact us.

Never give up – you are not alone!

Download of our Information Brochure (English)

 

05/09/2021 In Aplastic anemia (AA), illness, infection, vaccination By Ulrike

Third vaccination seems to increase protection against corona in immunosuppressive therapy

Syringe with vial for vaccination © weyo

Vaccination, vaccination, vaccination - there are few other topics that dominate the media, politics, but also our conversations with family and friends so much at the moment: Rightly, because the development of vaccines against the coronavirus and the increasing "vaccination coverage" of the population feed the hope of overcoming this crisis at some point.

For a few months, however, there have been indications that the corona vaccination does not work equally well for all people: A study from March of this year found that people taking immunosuppressive therapy are less able to develop protection against a COVID-19 infection than people without this medication. This can be easily explained:READ MORE

07/08/2021 In Aplastic anemia (AA), Clinical studies, illness, infection, Medication, Patient days, PNH, vaccination By Ulrike

Invitation to the Essen patient and family seminar

Virtual classroom © manfredsteger on pixabay

We are delighted that the Essen University Hospital is inviting you to its 12th PNH and AA seminar for patients and relatives . Due to the ongoing pandemic, it will take place virtually this year: On Saturday, September 25th, 2021 from 10 a.m. to 12 p.m. you will be brought up to date on the diseases and will have the opportunity to ask questions.


Invitation and link to participate
26/07/2021 In Aplastic anemia (AA), illness, offers, PNH, Regional groups By Ulrike

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 In Aplastic anemia (AA), infection, Medication, opinion poll, PNH, vaccination By Ulrike

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!

29/05/2021 In illness, infection, Medication, opinion poll, vaccination By Ulrike

Survey on COVID-19 at AA and PNH

Spritze mit Fläschchen für Impfung © weyo

Dear AA / PNH fellow patients,

Some time ago we informed you about a survey initiated by our association in cooperation with the lichter zellen foundation . The purpose of this survey is to record the effects that COVID-19 vaccination has on our patient group. At the same time, AA / PNH patients who have recovered from a COVID-19 disease can also take part in the survey.

We were able to make the survey known around the world, among other things, through the global network PNH Global Alliance . In the meantime, 72 patients from Germany, Austria and Switzerland and 12 patients from Europe have taken part in our survey. We are particularly pleased about the participation of 8 patients so far from Australia, Iran, Canada, Turkey and the USA.

This gives us the chance to make the results of this survey available to science in order to enable better care for our relatively small patient group in the future.

In order to achieve meaningful results, we are still dependent on the active participation of AA / PNH patients. Please pay attention to our survey and take a few minutes to answer the anonymous survey. You are helping all AA and PNH patients.

READ MORE