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Ellis-Van Creveld Foundation

Address: 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.

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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