08/10/2019
PNH Tag
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 READ MORE
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 isREAD MORE
08/09/2019
Letter of support
Do you have problems with your severely disabled ID? Our umbrella organization ACHSE (Allianz Chronic Seltener Erkrankungen eV) has written a letter of support to the responsible office *, which refers to the difficulties in determining the degree of disability (GdB)READ MORE
04/08/2019
Website updated again
A few weeks ago we had updated the chapter "Aplastic Anaemia". Now we added the new text on Paroxysmal Nocturnal Haemoglobinuria (PNH): https://aa-pnh.org/en/diseases/pnh/. We also added a new patient storyREAD MORELoading new posts...
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