A rare disease

There are only a few hundred patients in the Netherlands who suffer from Pseudo Xanthoma Elasticum (PXE), and this makes financing research into treatment of this rare disease very difficult. You can help us!

A rare disease

There are only a few hundred patients in the Netherlands who suffer from Pseudo Xanthoma Elasticum (PXE), and this makes financing research into treatment of this rare disease very difficult. You can help us!

Symptoms of PXE

Skin

Skin problems are often the first indication that a person has PXE. Small bumps, lesions and other changes in the skin may occur.

Heart and blood vessels

Because PXE causes mineralization and restriction of the arteries, sufferers may experience pain when walking.

Stomach and intestinal system

PXE often causes stomach/intestinal bleeding, which may be life-threatening as it is not always diagnosed immediately.

Eyes

Most patients will develop angoid streaks which can cause hardening of the elastic tissue in the eyes.

Latest news

Update COVID vaccinatie

12 April 2021

Wij krijgen veel vragen van patiënten over het COVID-19 vaccinatiebeleid, met name gezien de recente zorgen bij het AstraZeneca vaccin. Het streven is dat in Nederland iedereen >18 jaar voor 1 juli 2021 aangeboden wordt zich te laten vaccineren tegen COVID-19. Op dit moment zijn er binnen de EU 4 goedgekeurde vaccins: BioNTech/Pfizer, Moderna, AstraZeneca...

It is estimated that only between 400 and 500 people in the Netherlands suffer from PXE. It is a hereditary disease that causes the hardening of different tissues as result of a defect in the ABCC6 gene.

What can you do?