I am Karine Unger from the PXE France group. I am 31 years old and have two sons, ages three and four. With a small group of people we created the association three years ago and we are now more than 120 members. We have also great researchers working on PXE.
We organize regular European meetings with all the PXE association members, the doctors, and the researchers in Europe... and more! If you want to participate or have more information, don't hesitate to contact me!