Who are Proteus Family Network UK?
We have been established as a support group since 1998 and
registered UK Charity.
Our aim is to:
We have a committee and a Medical Advisory Board supported by
Consultants drawn from Gt Ormond St Hospital for Children in London,
and Bristol Children's Hospital.
- 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, Klippel Trenaunay
and associated conditions and its implication for the individual and
- to support research into the management of Proteus
Syndrome, Klippel Trenaunay and associated conditions.
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 living with
Proteus Syndrome, Klippel Trenaunay and associated overgrowth
- provide a telephone support line 365 days a year.
- provide information on specialist clothing and footwear
- provide grants for specialist equipment and needs
- support ongoing research into the causes of Proteus
Syndrome and Klippel Trenaunay
- publish regular newsletters
- host family get-togethers
- provide contact details of other families in your area,
living with Proteus and Klippel Trenaunay