illness

28/11/2019

Co-payments for eculizumab and ravulizumab

After eculizumab (Soliris®) was approved in June 2007, a second C5 complement inhibitor has been available for patients with ravulizumab (Ultomiris®) since July 2019. The co-payments differ even more significantly for the new drug than they have been up to now. READ MORE
By Ulrike
01/11/2019

DGHO annual meeting in Berlin

This year's annual meeting of the German, Austrian and Swiss Societies for Hematology and Medical Oncology - in short "DGHO Meeting" - took place from October 11-14, 2019 in Berlin and again offered numerous lectures, including on aplastic anaemia and PNH. In the case of aplastic anaemia, it wasREAD MORE
By Ulrike
28/09/2019

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 READ MORE
By Ulrike
08/09/2019

Letter of support

Partial illustration of a severely disabled ID card Do you have problems with your severely disabled ID? Our umbrella organization ACHSE (Allianz Chronic Seltener Erkrankungen eV) has written a letter of support to the responsible office *, which refers to the difficulties in determining the degree of disability (GdB)READ MORE
By Ulrike
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