29/02/2020
illness
07/02/2020
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
03/01/2020
Survey on working conditions
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
23/12/2019
Big donation from the JAV of the BVG
Donation handover at the JAV of the BVG
06/12/2019
DGHO guideline on PNH updated
The German Society for Hematology and Medical Oncology (DGHO) has updated the guideline for PNH . The recommendations for diagnosis and therapy were brought up to date.
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. WEITER
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 wasWEITER
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 WEITER
08/09/2019
Letter of support
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)WEITER
04/08/2019
Website updated again
A few weeks ago we had updated the chapter "Aplastic Anaemia". Now we added the new text on Paroxysmal Nocturnal Haemoglobinuria (PNH): https://aa-pnh.org/en/diseases/pnh/. We also added a new patient storyWEITERLoading new posts...
No more posts