Title Image

Welcome to our website!

We provide information about Aplastic Anaemia and PNH and our offers for patients and relatives. If you have any questions or comments, please feel free to contact us.

Never give up – you are not alone!

Download of our Information Brochure

 

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

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

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

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

We need you!

Our association is involved in a wide variety of areas - we provide information and advice to patients and their relatives, offer local group meetings, and operate information stands at events and conferencesWEITER

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