Exercise reduces risk of severe COVID-19 courses

It's no secret that exercise is good for our body: we have all heard or read somewhere that regular physical activity reduces the risk of developing metabolic or cardiovascular diseases, for example. For about a year, however, fitness studios and sports clubs have been closed and even an evening walk is made difficult in some places by a curfew. In short - the pandemic is not exactly making it easier for us to stay fit. Meanwhile, the large-scale British Journal of Sports Medicine study from the USA suggests that exercise is particularly important in these times: Almost 50,000 COVID-19 infected peopple were asked about their daily activitly level (looking back for the past two years before infection with SARS-CoV-2). The study was recently published. 14% of the respondents were physically inactive (≤ 10 minutes of exercise per week). 80% reported moderate activity (11-149 minutes of exercise per week) and 6% did steady 150 minutes of exercise per week. 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:

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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

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. WEITER

Foundation of the PNH Global Alliance

In June, representatives of international PNH patient organisations met in Amsterdam to found the PNH Global Alliance. In addition to us, the lichterzellen foundation from Germany was represented. Colleagues from Great Britain, the Netherlands, France and Spain were on site, while representatives from Canada and Russia were connected via video telephony. The goals of the Global Alliance include WEITER