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13/05/2021

Survey on COVID-19 vaccination and infection in AA and PNH patients

Dear fellow AA and PNH patients,

A few months ago, some of us began to receive their first COVID-19 vaccination. Meanwhile many had their second shot - but what does this entail to us who live with Aplastic Anaemia or PNH? What is the impact of the vaccination or - if you have had COVID-19 yourself - how did this affect your health? To find out and improve care for us we would like to hear your voice!

Therefore we started a short survey which is supported by German AA/PNH specialists. We ask you to answer a few questions and to update at any time there is something to add regarding the vaccination or a COVID-19 infection, for example if you received another COVID-19 vaccination or develop further side effects.

The results of this survey will be free of charge and made available for scientific purposes only. The data are collected anonymised and protected through the European GDPR. If you would like us to send you further information or results about this survey you can leave your email address after completing the survey. This will be stored separately from your anonymous health data.

Please inform other AA/PNH patients about this survey after you completed it as the more participants we have, the better this research will be.

Thank you for your participation!

07/05/2021

Physical activity reduces risk of severe COVID-19 infection

It is no secret that exercise is good for us: We have all heard or read somewhere that regular physical activity reduces the risk of developing severe diseases like metabolism (affects biochemical processes within your body’s cells) or cardiovascular (heart and vessels) diseases. For about a year now, however, gyms and sports clubs have been closed and with ongoing curfews even the evening walk may be difficult in some places. In short, the pandemic is not making it any easier to stay fit. Yet, as a large-scale study from the United States suggests, exercise is as important as ever. For the study which was published in the British Journal of Sports Medicine almost 50,000 people infected with COVID-19 were asked about their daily activity levels (looking back over the past two years before infection with SARS-CoV-2). 14% of respondents were physically inactive (upto 10 minutes of exercise per week), 80% reported moderate activity (11-149 minutes of exercise per week) and 6% moved steadily over 150 minutes per week.

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10/04/2021

Results of Pegcetacoplan (APL-2) trial

A recently published study from Leeds, England, investigates the efficacy of the new drug pegcetacoplan for Paroxysmal Nocturnal Haemoglobinuria (PNH). Pegcetacoplan is not yet approved for PNH therapy in Europe, but approval is currently being considered 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 disorder of blood formation underlying PNH in order to understand how pegcetacoplan works:

Normally, certain proteins are found on the surface of the red blood cells (erythrocytes) that transport oxygen through our bodies. Among other things, these regulate the immune system and prevent the erythrocytes from being broken down prematurely as they circulate through the body. In PNH,READ MORE

22/02/2021

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:

The Ulm University Hospital's vaccination advice letter for AA/PNH patients is based on the current recommendations of the Ständige Impfkommission (STIKO) of the Robert Koch Institute, previous studies on the approved vaccines, and the Ulm AA/PNH Centre's experience with COVID-19 vaccinations.

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22/02/2021

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.