The Pseudoxanthoma Elasticum Support Group (pixie)

Charity information
The Pseudoxanthoma Elasticum Support Group (pixie)
1st in the World we support patients with a rare genetic disorder affecting the skin, eyes, cardiovascular, gastrointestinal bleeding, intermittent claudication calcified arteries and blood vessels.
Founded 1984
-
Mission statement
We are all one big PXE family, we have one vision, we will fight to raise PXE awareness and save our sight.
-
Aims
The Pseudoxanthoma Elasticum Support Group (pixie) aims to:
- PXE sufferers lose their sight as the medical profession do not know about the disease. Once we start to lose our sight treatment must be given within 10 day or its too late. All have right to sight.
- We need to raise awareness of this rare disease, we can lose sight, have gastrointestingal bleeds, calcified arteries and blood vessels, have problems walking. Public and medics need to know about PXE
-
Overview
Established: January 1984
Registered Charity Number: 1055465
Board members: 4
Part time staff: 1
Volunteers: 2
Phone number: 01628476687
Address: 15 Mead Close Marlow Bucks SL7 1HR
View charity accounts on the Charity Commission website
