01/11/2019
society Tag
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
06/10/2019
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
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
12/05/2019
New board of the association
At the general meeting of our association on May 11th, 2019, the members re-elected the board. WEITER
17/03/2019
Rare Disease Day 2019 in Mainz
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
reported 2018
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