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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

 

Study on family planning after transplantation

Cutout poster study family planning after transplant The Hannover Medical School (MHH) would like to shed light on the subjects of having children, family planning and pregnancy after transplantation as part of a study. The aim is to improve the care of transplant patients. If you have had a transplant and are between 18 and 45 years old, you can take part under the following link and contribute your wishes, thoughts and suggestions: https://ww2.unipark.de/uc/familienplanungTX/ The survey takes 15-20 minutes.

Further information (PDF, 1 MB)

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

Essen PNH / AA seminar 2020 canceled

The University Hospital Essen has decided to cancel the patient and relatives seminar on PNH and AA planned for September 26, 2020 due to the current and ongoing situation caused by the SARS-CoV-2 pandemic. The exchange and contact between the participants are not possible as usual due to the contact restrictions, so that an important element of the event would be missing. But the planning for the seminar next year is already underway, the date is 09/25/2021 !

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 .

AA & PNH eV on Facebook

Our association Aplastic Anemia & PNH eV, AA & PNH eV for short, now has its own page on Facebook ! There we present the association and its history. We also point out events such as group meetings and patient days as well as information on the diseases and current topics.


AA & PNH eV - Front page Facebook WEITER

Information on the COVID-19 pandemic for AA and PNH patients

 

UPDATE - the letter has been updated:

 

Letter of recommendation on Corona at AA and PNH as of March 25, 2020 (2 MB)

 

Miss Dr. Höchsmann from the center in Ulm, which specialises in AA and PNH, has put together information and assistance in dealing with the COVID-19 pandemic. Please follow the instructions and stay as healthy as possible!

 

Note: The websites listed in the letter are not linked, they follow here:

WEITER

DLH member annual meeting 2020


On 7th and 8th March 2020 the annual general meeting of members (MJHV) of our umbrella association, the German Leukemia & Lymphoma Aid eV (DLH) took place in Königswinter. Since the spread of the SARS-CoV-2 virus only affected a manageable number of people and the district health department had not a single case, the event could be carried out as planned.

The first day was dedicated to the advanced training of the group leaders present. 4 workshops were offered:

WEITER

The “corona virus”

COVID-19 or Corona virus SARS-CoV-2 is currently causing excitement or worry in many people. This is mainly due to the uncertainty that results from the novelty and the lack of experience. For the vast majority (approx. 80%) of those infected, the infection appears to be harmless. People who are older or have previous illnesses are currently considered to be particularly at risk of complications. The following information can help: WEITER

Ravulizumab (Ultomiris®) with no added benefit

The Federal Joint Committee (G-BA) has certified that the second C5 complement inhibitor ravulizumab (Ultomiris®) approved against paroxysmal nocturnal hemoglobinuria (PNH) has no additional benefit compared to the appropriate comparator therapy (previous standard) eculizumab (Soliris®). This resulted in the benefit assessment procedure according to Section 35a SGB V, which was completed on February 6, 2020. WEITER

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