Proteus Family Network UK

31 Baswich Lane
Weeping Cross
Stafford
ST17 0BH

Tel: 01785 254953
Web: www.proteus-uk.org
Best time to telephone: any reasonable time between 9am - 10pm.

Proteus Syndrome is a very rare congenital condition. The Proteus Family Network UK is a network for families and individuals affected by the syndrome to enable them to have contact with other families in similar circumstances. The Network has information on a clothing and footwear database. The aims of the Network are as follows.

• To create a network of families affected by Proteus syndrome.
• To help and encourage contact between the children.
• To collate current information on Proteus syndrome.
• To raise awareness of Proteus syndrome with other professionals.
• To help and encourage any research work being done into Proteus syndrome.
• To offer mutual support and friendship to affected families.
• Help fund research into causes of Proteus.
• Hold regular family weekends.
• Welcome families with associated conditions, especially Klippel Trenaunay syndrome.

The Network publish newsletters which are also available to download from their website. They also work with and are supported by a Medical Advisory Board drawn from Great Ormond Street Hospital.

They welcome familes/individuals who are affected by associated overgrowth conditions and particularly Klippel Trenaunay syndrome. They have a Klippel Trenaunay dedicated contact. They are also able to provide details for referral to specialist adult clinics for Proteus and other overgrowth conditions.