08/12/2019
PNH Tag
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
19/10/2019
Alexion plans to acquire Achillion
Alexion Pharmaceuticals, the maker of eculizumab (Soliris®) and ravulizumab (Ultomiris®), has reached an agreement with Achillion Pharmaceuticals to provide the smaller biopharmaceutical company for approximately $ 930 million (equivalent to approximately € 840 million) take over. If Achillion shareholders and regulators agreeWEITER
08/10/2019
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
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
16/09/2019
Further publication on the questionnaire quality of life of AA / PNH patients
The Aachen University Clinic has completed phase III of the project “Health-related quality of life of patients with paroxysmal nocturnal haemoglobinuria and / or aplastic anaemia”, which is supported by our association. The aim of the project isWEITER
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...
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