Who are Proteus Family Network UK?

kids We have been established as a support group since 1998.

Our aim is to:
  • preserve and protect the health and promote the welfare of persons affected by Proteus Syndrome and associated conditions.
  • to advance the education of the medical profession and the general public on the subject of Proteus Syndrome and associated conditions and its implication for the individual and their family.
  • to support research into the management of Proteus Syndrome and associated conditions.
We have a small committee and a Medical Advisory Board supported by Consultants drawn from Gt Ormond St Hospital for Children in London, and Bristol Children's Hospital.

We are registered with Contact a Family, NHS Direct and are a member of the Rare Orders Alliance UK.

We welcome individuals and families who suffer with associated overgrowth conditions and especially those with Klippel Trenauny Syndrome. The KT section is expanding and we are able to link you with other families in various regions of the UK and abroad.

What do we do?

  • provide support to families and individuals encountering Proteus for the first time.
  • provide information on specialist clothing and footwear
  • support ongoing research into the causes of Proteus
  • publish regular newsletters
  • host family get-togethers

 

 
 
Registered Charity 1098608
Secretary: Jean Harrison, 10 Overhill Road, Weeping Cross, Stafford, ST17 0QA
01785 661263, jean@proteus-uk.org