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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

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

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

Approval of pegcetacoplan for PNH patients

On 13 December 2021 a new drug for the treatment of adult patients with PNH was approved in the EU: The substance pegcetacoplan which inhibits specific processes in the immune system will probably be available in Germany in the beginning of 2022. Its trade name is Aspaveli®.

The drug is a so-called C3 complement inhibitor: The complement system is part of the body's own immune system which in PNH attacks the red blood cells (erythrocytes) and destroys them. Pegcetacoplan inhibits a certain part of the complement system and thereby the destruction of red blood cells outside the blood vessels (extravascular), leading to an improved life cycle of the erythrocytes and improved haemoglobin levels.

Pegecetacoplan is approved for patients who remain anaemic despite treatment with a C5 inhibitor (eculizumab or ravulizumab) for at least 3 months. C5 is also part of the complement system. The drug is administered twice a week as a subcutaneous infusion. Among the most common side effects are reactions at the injection site, infections of the upper respiratory tract, headache, abdominal pain, and diarrhoea.

"Summary of product characteristics" by the European Medicines Agency EMA.

The drug is not entirely new: On 5 April of this year, we already reported in detail on the mechanism of action and the current studies on it in a blog post on our website.

Interview on the work of self-help

Rainer Göbel in an interview with Stephan Pregizer © Cancer Survivor

 

Some people may still have the idea that self-help is nothing more than sitting in a circle of chairs and only talking or even moaning about the topic in which the corresponding self-help group is concerned, in our case about illnesses.

In fact, one of our core tasks is to enable patients and their relatives to exchange ideas with one another, be it in the said circle of chairs, when visiting a restaurant together, in virtual meetings or in some other way. But our range of tasks is diverse and we offer much more than just an exchange. We publish information material, have information stands at events, attend congresses and are involved in (political) lobbying. Rainer Göbel, member of our board and chairman of our umbrella association German Leukemia & Lymphoma Aid (DLH), gives an insight into the work of self-help using the example of blood cancer in an interview with Stephan Pregizer from the Cancer Survivor initiative - take a look for yourself:

to the video

   

Ravulizumab approved for children and adolescents

Ravulizumab (trade name Ultomiris®) has been approved for the treatment of PNH in adults since July 2019, according to the manufacturer Alexion Pharmaceuticals, Inc. also the approval of the European Commission for use in children from 10 kg body weight and adolescents.