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Swiss Educated PNH Specialist Contact Info
Hi Anja,
I'm sorry about your diagnosis and that you're not feeling so well. Soliris protects the kidneys and I know patients who's severe migraines went away once they began it. Most have far more energy on it. Best to consult with PNH specialist to decide if needed.It is most likely covered by national insurance in Switzerland.
My PNH specialist can help you locate the closest specialist to you if you'd like her suggestion. There aren't very many of them. The PNH support group neal mnetioned has much info and you can 'talk' to many other patients there.
Dr Bessler Contact/bio: http://www.research.chop.edu/researc....php?ID=941940
Her PNH presentation: http://www.rarediseases.org/docs/pnh...012PNHTalk.pdf
Suz
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AA/PNH Dx 1998, Warfarin, Soliris
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