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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!

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28/02/2021 In DLH, Information booths, Patient days, Publicity, Regional groups By Ulrike

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.

WEITER
09/02/2021 In illness, Studies By Ulrike

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. WEITER
02/02/2021 In Clinical studies, illness, infection, Medication, vaccination By Ulrike

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:WEITER
19/12/2020 In Aplastic anemia (AA), offers, PNH, Regional groups By admin

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.

07/12/2020 In illness, infection, Studies By Ulrike

Pandemic Impact Survey on AA / PNH Patients

In July / August 2020, under the leadership of Priv.-Doz. Dr. Fabian Beier started the first round of a survey to record the effects of the SARS-CoV-2 pandemic on AA and PNH patients in Germany. The focus was on the availability of information on COVID-19 and delays in treatments. We were very pleased that the lichterzellen foundation and our association were included in the design of the survey.
The evaluation of the first round of questions showed that around 20% of the respondents had little or no access toWEITER
25/11/2020 In Uncategorized By Ulrike

RAVULIZUMAB AVAILABLE IN MORE CONCENTRATED FORMULATION

In Germany, Ravulizumab is now available in a more concentrated formulation (100 mg/ml compared to 10 mg/ml previously). The new formulation significantly shortens the infusion time while maintaining safety and efficacy. Previously, the infusion took at least two hours, but with the new formulation it will be about 60% faster on average, depending on the dose and weight of the patient. It became available as an infusion in Germany on 5 January 2021.
23/11/2020 In Uncategorized By Ulrike

first virtual AA/PNH meeting took place on 19 November 2020

On Thursdy last week, we had our first virtual meeting. From all over Germany, they took the chance to talk to others.

All in all, eight people from all over Germany attended. Those patients who had no chance to meet others face-to-face took the chance to chat virtually during the meeting which lasted 2 and a half hours. It was a successful event, which we would like to continue until a personal meeting is possible again.

The next virtual meeting will be on 17 December 2020. We look forward to meeting you 😊

16/10/2020 In Medication, Studies By Ulrike

EMAA trial

EMAA trail for patients with moderate Aplastic Anaemia Adult patients with acquired moderate Aplastic Anaemia (mAA) who have not received a specific treatment for their mAA may be included in the EMAA trial of Ulm University (Eltrombopag in Moderate Aplastic Anaemia). They receive either ciclosporin and eltrombopag or ciclosporin and a placebo. The aim of the trial is to evaluate the efficacy and safety of the combination therapy of ciclosporin and eltrombopag. Patients with or without prior transfusions can be included.
WEITER
01/10/2020 In Clinical studies, illness, Medication By Ulrike

Results of RACE trial

The EBMT (European Society for Blood and Marrow Transplantation) conducts the RACE clinical trial to evaluate the combined therapy of equine ATG, ciclosporin and eltrombopag in patients with severe or very severe Aplastic Anaemia. "RACE" means "A prospective Randomized multicenter study comparing horse Antithymocyte globuline (hATG) + Cyclosporine A (CsA) with or without Eltrombopag as front-line therapy for severe aplastic anemia patients". Results of the trial (in the Netherlands by way of example) show good response rates in the patients who received all three medicines. In Germany, the trial must not be conducted because of missing admissions. However, we consider it to be important to watch the trial data in order to use it ind admission discussions with authorities.