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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)

 

28/05/2021 In Aplastic anemia (AA), Clinical studies, DLH, illness, Medication, Patient days, PNH By Ulrike

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! ***



27/04/2021 In illness, infection, Medication, opinion poll, vaccination By Ulrike

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 .

25/04/2021 In illness, infection, Studies By Ulrike

Exercise reduces risk of severe COVID-19 courses

It's no secret that exercise is good for our body: we have all heard or read somewhere that regular physical activity reduces the risk of developing metabolic or cardiovascular diseases, for example. For about a year, however, fitness studios and sports clubs have been closed and even an evening walk is made difficult in some places by a curfew. In short - the pandemic is not exactly making it easier for us to stay fit. Meanwhile, the large-scale British Journal of Sports Medicine study from the USA suggests that exercise is particularly important in these times: Almost 50,000 COVID-19 infected peopple were asked about their daily activitly level (looking back for the past two years before infection with SARS-CoV-2). The study was recently published. 14% of the respondents were physically inactive (≤ 10 minutes of exercise per week). 80% reported moderate activity (11-149 minutes of exercise per week) and 6% did steady 150 minutes of exercise per week. READ MORE
05/04/2021 In Clinical studies, Medication, Studies By Ulrike

Results of the PEGASUS study on APL-2

A recently published study from Leeds, England examines the effectiveness of the new drug pegcetacoplan on paroxysmal nocturnal hemoglobinuria (PNH). Pegcetacoplan has not yet been approved for PNH therapy in Europe, but approval is currently being examined by the European Medicines Agency (EMA). For this reason, we would like to briefly introduce the drug and the study to you and first take a brief look at the blood formation disorder underlying PNH in order to understand how Pegcetacoplan works:

Normally there are certain proteins on the surface of the red blood cells (erythrocytes), which transport oxygen through our body. Among other things, these regulate the immune system and prevent the erythrocytes from being broken down prematurely as they circulate through the body. At the PNHREAD MORE

11/03/2021 In Uncategorized By Ulrike

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.

READ MORE