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PXE International

Raven Cottage
31 Meeting Street
Quorn
LE12 8EU

Tel: 01509 621148
Web: www.pxe.org

Offers advice and support for people with pseudoxanthoma elasticum (PXE).

The goals of PXE International are to:

  • Disseminate information to patients, families and doctors.
  • Initiate and support research.
  • Review the literature.
  • Establish patient support networks.
  • Manage the PXE International Blood and Tissue Bank.

They maintain an international register of all affected families and helpful medical specialists. They disseminate information about PXE, both for lay people and medical specialists, in many languages. They have networks throughout the world, providing written, telephone, e-mail, physician referral and meeting connections. The PXE International Blood and Tissue Bank provides DNA and tissue samples, anonymously, to all approved research projects.

Checked: 22 Feb 2011
For the planned review period see the Data Creation and Quality Control Process.

Comprehensive patient resources are available at www.patient.co.uk

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