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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)

 

20th anniversary of the association – a look back

Do you know this feeling? Wake up in the morning, maybe it smells like coffee, maybe breakfast is already ready and someone gives a bouquet of flowers or a first gift - someone calls and congratulates, a serenade at work or among friends and at the end of the day a nice, big one Celebrate with ... stop! It's February, it's the year 2021 and the corona pandemic still has a firm grip on our country and the world. The first lockdown was decided almost a year ago and it is very likely that you have already experienced it: It is your birthday in the pandemic .

Our association Aplastic Anemia & PNH eV also celebrated its birthday last week, namely its 20th anniversary. For known reasons, however, there was no question of “celebrating” in this context - even if we did not give up hope of being able to make up for it one day. Until then, however, we don't want to simply skip the club's anniversary: It's a wonderful opportunity to review the past 20 years. Perhaps you have been with us from the start, perhaps you only became aware of the association a few weeks ago: We are very pleased that you are part of it, we would like to thank you for your interest, your questions and suggestions, and we would like to take a look back at you invite you to 20 years of AA & PNH eV.

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Patients with stem cell transplants: study on sport and exercise

Heidelberg University is currently carrying out a research project in collaboration with the National Center for Tumor Diseases (NCT): Patients who have received a stem cell transplant are asked about their attitudes towards physical activity. Specifically, the aim is to determine how patients feel about physical activity during and after a stem cell transplant, how they perceive it and how well they feel advised in this regard. Above all, questions are asked about the situation before the start of the pandemic, when sport and exercise were perhaps easier and more diverse. As an association, we would like to support this study, because its aim is to adapt the offers of help and information materials on the subject of "Sport and exercise in stem cell therapy" more specifically to the wishes and needs of the patients. READ MORE

RECOMMENDATIONS OF THE ULM UNIVERSITY HOSPITAL ON COVID-19 VACCINATION IN AA/PNH

A few weeks ago, vaccinations against the SARS-CoV-2 virus began in Germany. As announced in our February virtual group meeting, the Ulm University Hospital, as one of the most important AA/PNH centres in Germany, has now published a recommendation letter (German) on this topic. If you need assistance with details contained in the recommendation letter please email us at info(at)aa-pnh.org or give us a call: +49 30 549094080. We briefly summarise the most important contents for you below:READ MORE

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.