The Netherlands Welcome


Hello everybody,

My name is Yvonne Rijpstra and I am a PXEer living in Zeist, Holland. I am 55 years old and together with my husband we work as Secretary for the support group PXE Nederland.

After experiencing vision loss in 2000, surgeries on both my legs in 2006, and a dangerous stomach bleed in 2009, I came in contact with PXE Nederland, and they gave me a lot of support and information. The meetings with other people with PXE and doctors were very good for me.

On October 27, 2012, PXE Nederland held a contact day for all our members. It was a very good day thanks to Dr. W. Spiering, Koen van de Wetering, Prof. M. v. Steensel and Dr. A. Ossenwaarde.  There were many questions and answers, and everybody was happy they were there.

We hope that there will be more people in the Netherlands to join us on our website or Facebook, so that we can continue to grow. The more members we have, the more doctors are willing to learn more about PXE!

See you on our website or Facebook!


Yvonne Rijpstra

PXE Nederland PXE contactgroep on Facebook: