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Pixie (supporting sufferers with Pseudoxanthoma Elasticum)

Website: www.pxe.org.uk
Description:

The Pseudoxanthoma Elasticum - (PiXiE) is a non-profit making charitable trust, founded in 1984 by Elspeth Lax and run entirely by unpaid volunteers.

Pseudoxanthoma Elasticum (PXE) is an inherited disorder in which elastic fibres, which are normally found in the skin, retina of the eyes, and the cardiovascular system, become slowly calcified, producing characteristic changes in these three areas.

Aims:

  • To help the patient who may feel alone and isolated.
  • To help, encourage, assist those with PXE and their families.
  • To assist those in need as they seek a diagnosis.
  • To inform the public, medical profession and support services about PXE and promote national awareness.
  • To find funding for future research into PXE now that the gene has been found.

Activities:

  • Provides information on the various aspects of PXE.
  • Produces a newsletter, "PiXiE", containing medical articles and letters from members.
  • Holds bi-annual conferences to which all members, their families and friends are invited.

Membership: Please contact for current membership fees.

DIAL Disclaimer

Whilst all the information given in this document was correct at the time of going to press, DIAL Doncaster cannot be held responsible for any subsequent changes.

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