Proteus Syndrome Foundation UK

This is a national support group, started in 1996 and run by the mother of a child who has Proteus Syndrome. The group gained registered charity status in September 1999 (registered charity no.1077796). The group currently helps over 50 families in the UK and Europe. The PSF UK is affiliated to Contact A Family and is a member of the Rare Disorders Alliance.

The PSF UK is an international chapter of the Proteus Syndrome Foundation that was started in the USA by Kim Hoag. The PSF UK is managed by volunteers with no paid staff.

Our Mission Statement

The PSF has been founded to support and educate families and professionals and to raise money for research to find a cure for individuals living with Proteus Syndrome. The Proteus Syndrome Foundation UK's efforts are dedicated to the loving memory of Patrick Conlin King, Alex Hoag and all other children who have lost their lives to Proteus syndrome.

The Support Group Staff

The Support Group is run by a small commitee:

Chairperson - Tracey Whitewood-Neal (parent of child with PS)
Secretary - Amanda Summers
Treasurer - Paul Collins

As an active group we exist to help the families affected by Proteus syndrome. Benefits of joining the support group include:

  • Access to a medical advisory board, details of the latest research, invitation to conferences and the chance to attend the research programme.
  • Emotional support by speaking to other families, family meetings, quarterly newsletters, family bulletins and access to the library of medical articles on Proteus syndrome.
  • Funding available to improve the quality of life of the individual/family living with Proteus syndrome.

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