Who are Proteus Family Network UK?
We have been established as a support group since 1998 and
are a
registered UK Charity.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, Klippel Trenaunay and associated conditions and its implication for the individual and their family.
- 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 conditions.
- 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
Secretary: Jean Harrison, 10 Overhill Road, Weeping Cross, Stafford, ST17 0QA
01785 661263, jean@proteus-uk.org