02/02/2021
Aplastic anemia Tag
19/12/2020
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
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
08/07/2020
Survey by the Aachen University Hospital on the consequences of the COVID-19 pandemic for AA / PNH patients
Since the current COVID-19 pandemic creates a lot of unrest and new questions arise every day, the University Clinic Aachen, under the direction of Priv.-Doz. Dr. Fabian Beier developed a survey (so-called Soci-Survey). In doing so, the clinic would also like to meet the wishes of many patients to collect and evaluate data on the current COVID-19 situation in order to learn about the effects of the pandemic on personal life and medical care as well as knowledge of its course and frequency of COVID-19 especially in patients with PNH and / or AA or dyskeratosis congenita (DKC).WEITER
11/05/2020
DGHO guideline on coronavirus infection
in patients with blood and cancer diseases
**** updated on 05/11/2020 ****
The German Society for Hematology and Medical Oncology (DGHO) updated its guideline for coronavirus infection (COVID-19) in patients with blood and cancer diseases on May 11, 2020. In its guideline, the DGHO explains what SARS-CoV-2 exactly means, names the risk factors and gives advice on prevention and therapy, among other things. She deals with aplastic anemia under point 6.2.9, PNH under point 6.2.56. For further information on COVID-19, see also the information provided by Dr. Höchsmann made recommendations as well as our blog post .
03/01/2020
Survey on working conditions
The University of Cologne - Chair for Work and Vocational Rehabilitation - would like to find out in an anonymous online survey what the working conditions of people with health impairments are like. The aim is to use the information obtained "at first hand" to help improve their working conditions in the long term. Anyone over the age of 18 who is currentlyWEITER
23/12/2019
Big donation from the JAV of the BVG
Donation handover at the JAV of the BVG
08/12/2019
Next meeting of the regional group NRWplus in spring 2020
The next meeting of our regional group NRW plus under the direction of Anneruth Fiethen-Jacobi will take place in spring at a new location. The last round on November 9th, 2019 was so well attended with eleven participants thatWEITER
01/11/2019
DGHO annual meeting in Berlin
This year's annual meeting of the German, Austrian and Swiss Societies for Hematology and Medical Oncology - in short "DGHO Meeting" - took place from October 11-14, 2019 in Berlin and again offered numerous lectures, including on aplastic anaemia and PNH. In the case of aplastic anaemia, it wasWEITER
08/10/2019
11th Essen patient seminar successful
On September 28, 2019, the Essen University Hospital held its 11th patient and family seminar on PNH and AA. Under the direction of Prof Dr Ulrich Dührsen and PD Dr Alexander Röth as usual a varied and exciting program was offered that left enough space for breaks and exchanges between the more than 200 participants. WEITERLoading new posts...
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