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 !
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.
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!
The websites listed in the letter are not linked, they follow here:
On 07. The annual general meeting of members (MJHV) of our umbrella association, the German Leukaemia & 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:
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:
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.
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
The youth and trainee representatives (JAV) of the Berliner Verkehrsbetriebe (BVG) presented us with a very generous donation on December 12th, 2019. At the annual cake bazaar organized by the JAV,WEITER
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