PNH Tag

Big donation from the JAV of the BVG

  The youth and trainee representatives (JAV) of the Berliner Verkehrsbetriebe (BVG) presented us with a very generous donation on December 12th, 2019. At the annual cake bazaar organized by the JAV,WEITER

Next meeting of the regional group NRWplus in spring 2020

The next meeting of our regional group NRW plus under the direction of Anneruth Fiethen-Jacobi will take place in spring at a new location. The last round on November 9th, 2019 was so well attended with eleven participants thatWEITER

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.

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

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

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

Update of PNH guideline

 

Guidelines are summaries of the current scientific knowledge about a disease – in addition to a complete list of possible symptoms and the most targeted diagnostic methods, you can read about the best possible treatment options according to the current state of knowledge. They serve primarily as a non-binding guide for doctors, but also contain interesting information for patients. Every now and then, guidelines are updated so that the findings of new studies can be incorporated into everyday medical practice - this is exactly what happened this month for the PNH guideline of the German Society of Haematology and Medical Oncology (DGHO) . The last version was still from November 2019 and a revision was necessary in particular to bring recommendations on the use of new drug therapy options up to the status of 2022: Specifically, we are talking about pegcetacoplan, the new C3 complement inhibitor, which has been approved in the EU since December 2021 under the trade name Aspaveli® and, according to the manufacturer Swedish Orphan Biovitrum AB (Sobi), is expected to be available as a therapy option in Germany from April 2022. WEITER