Support

Proteus Syndrome Foundation – UK (PSF UK)
2 Watermill Close
Bexhill-on-Sea
East Sussex TN39 5EJ
Tel: 01424 736640
E-mail: tracy.whitewood_neal@virgin.net
Website: www.proteus-syndrome.org.uk
National support group started in 1996 and run by Jordan's mother Tracey. The group currently helps over 50 families in the UK and Europe. They exist to help the families affected by Proteus and provide emotional support through family meetings, quarterly newsletters, family bulletins and access to the library of medical articles on Proteus Syndrome.

Proteus Family Network (UK)
31 Baswich Lane
Stafford ST17 0BH
Tel: 01785 254 953
E-mail: info@proteus-uk.org
Website: www.proteus-uk.org
A network for families and individuals affected by the syndrome to enable them to have contact with other families in similar circumstances. They support ongoing research into the causes of Proteus, provide information on specialist clothing and footwear, publish regular newsletters and host family get-togethers. Also welcome patients with associated conditions and in particular those with Klippel Trenauny Syndrome.