Farthingale Farm
Hackmans Lane
Purleigh
Chelmsford
Essex
CM3 6RW

Tel: 01621 829 675

Description:
Supporting those with Ellis-Van Creveld Syndrome.

Aims:

• To be of help and give moral support to existing families and those newly diagnosed with Ellis-Van Creveld Syndrome.
• To raise the awareness of EVC Syndrome in order that existing and newly diagnosed families can have immediate contact with another EVC family.
• To increase the likelihood of research being carried out into identifying this defective gene.
• To share the experiences of affected families including what problems they have experienced and how they can be addressed.

Activities:

• Making initial contact with EVC families not presently in touch with the Foundation.
• Raising the visibility of Ellis-Van Creveld Syndrome and the Foundation by making contact with key geneticists, the British Paediatric Association, research scientists, the Organisation for Rare Disorders and child growth clinics.
• Obtaining biographical details on each EVC child, and updating when necessary, for use to, research scientists, growth clinics and doctors.
• Having representatives who attend conventions and meetings related to growth matters.
• Being fully appraised of the latest surgery/treatments of possible help to those with ECV syndrome.
• Advising families on possible treatments.

updated 30/10/07

DIAL Disclaimer
Whilst all the information given in this document was correct at the time of going to press, DIAL Doncaster cannot be held responsible for any subsequent changes.

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