Author: Ulrike

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 toREAD MORE
By Ulrike
25/11/2020

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.
By Ulrike
23/11/2020

first virtual AA/PNH meeting took place on 19 November 2020

On Thursdy last week, we had our first virtual meeting. From all over Germany, they took the chance to talk to others.

All in all, eight people from all over Germany attended. Those patients who had no chance to meet others face-to-face took the chance to chat virtually during the meeting which lasted 2 and a half hours. It was a successful event, which we would like to continue until a personal meeting is possible again.

The next virtual meeting will be on 17 December 2020. We look forward to meeting you 😊

By Ulrike
16/10/2020

EMAA trial

EMAA trail for patients with moderate Aplastic Anaemia Adult patients with acquired moderate Aplastic Anaemia (mAA) who have not received a specific treatment for their mAA may be included in the EMAA trial of Ulm University (Eltrombopag in Moderate Aplastic Anaemia). They receive either ciclosporin and eltrombopag or ciclosporin and a placebo. The aim of the trial is to evaluate the efficacy and safety of the combination therapy of ciclosporin and eltrombopag. Patients with or without prior transfusions can be included.
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By Ulrike
01/10/2020

Results of RACE trial

The EBMT (European Society for Blood and Marrow Transplantation) conducts the RACE clinical trial to evaluate the combined therapy of equine ATG, ciclosporin and eltrombopag in patients with severe or very severe Aplastic Anaemia. "RACE" means "A prospective Randomized multicenter study comparing horse Antithymocyte globuline (hATG) + Cyclosporine A (CsA) with or without Eltrombopag as front-line therapy for severe aplastic anemia patients". Results of the trial (in the Netherlands by way of example) show good response rates in the patients who received all three medicines. In Germany, the trial must not be conducted because of missing admissions. However, we consider it to be important to watch the trial data in order to use it ind admission discussions with authorities.
By Ulrike
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