illness

05/09/2021

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

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
29/05/2021

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
By Ulrike
28/05/2021

Workshop on AA / PNH on June 14th, 2021

Notebook und Becher © Chris Montgomery on Unsplash

A virtual workshop on aplastic anemia and PNH will take place on Monday, June 14th, 2021 at 5 p.m. Prof. Dr. Jörg Westermann from Charité - Universitätsmedizin Berlin will inform you about the origin, diagnosis and treatment options for both diseases and is available to answer any questions. Afterwards, the participants have the opportunity to exchange experiences with one another.

The workshop is part of the DLH patient congress ( Deutsche Leukämie- & Lymphom-Hilfe eV ), which also offers numerous other workshops on, in some cases, cross-disease topics. Take a look at the program and register at https://www.dlh-kongress.de/der-kongress/online-anmeldung/ .

*** Attention! The workshop is not recorded so you cannot watch it later! ***



By Ulrike
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