Kære alle EPPér!
Hermed lidt information hvad jeg har snuset op mellem den tysk/schweiziske best. medlem og den kanadiske formand. Jeg håber at få lidt mere at vidde til vores Europæsike møde i September.
Dear Wendy, dear all,
Thank you very much for the huge work to provide and distribute such material!
In addition to the great news Herbert already wrote about the approval of Scenesse, I would like to point out to you two intersting new therapeutic approaches:
- There are at the moment preparations ongoing for a big and exciting study to treat all forms of acute porphyrias with a new drug which targets the overproduction of heme precursors in the liver. If this works in humans, it would be a real break through for acute porphyria patients.
- More on a research level is an other therapeutic approach for EPP, in which the faulty gene most EPP patients share is targeted. Two research groups are actually investigatinging in this direction.
At September 13th 2015, the next international patients day will be held in Germany, Düsseldorf. The topic of the day are the three new therapies.
The organizing commitee from the Netherlands and Germany (both EPP patients organisations) are preparing the program an will soon provide more information.
I hope to meet you in Düsseldorf!