activities Tag

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

Rare Disease Day 2019 in Mainz

rarediseaseday.org On February 22nd, 2019, an exhibition of around 20 self-help groups including the Aplastic Anemia & PNH eV took place in the Mainz town hall from 9 a.m. to 1 p.m. as part of the day for rare diseases. The event was organizedWEITER
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