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Who We Are

Diana Perry – Founder, Chief Executive and Secretary

Diana is the founder of the Ectodermal Dysplasia Society and has worked on a full time voluntary basis since 1996. Diana is married to Ian and has 5 children. Two of Diana’s sons are affected by Ectodermal Dysplasia, one born in 1991 and the other born 1995.

Diana has considerable experience and many duties; she attends conferences; makes presentations to medical professionals and medical students; co-chairs the International Ectodermal Dysplasia Leaders meetings and conferences whereby we are able to help our Ectodermal Dysplasia communities around the world; attends school meetings, tribunals for Disability Living Allowance or Personal Independent Payment with you; proof reads patient information leaflets for the British Association of Dermatology; assists with research into aspects of Ectodermal Dysplasia; liaises with families and individuals; writes articles for our newsletter and medical journals; writes information leaflets and the content of the website; liaises with medical professionals on your behalf; attends Trustee and Medical Advisory Board meetings.

Sue Beard, Dip. L.A.M – Accounts / Website Management

Sue has been with the Society since 2003. She has two children and previously worked as a Legal Accountant for a large firm of Solicitors. She has over 30 years accounts and IT experience.

Sue is the Office Manager and deals primarily with the financial side of the Society; IT; management of the UK and EDIN (Ectodermal Dysplasia International Network) websites and the UK ED Society Support Fund.

Danielle Gue – Senior Administrator

Danielle works as a Senior Administrator for the Society and previously worked in an accounts team at a hotel. Danielle had no previous knowledge of Ectodermal Dysplasia before joining the Society in 2015. She has 2 children.

Danielle is responsible for helping produce our newsletters; checking through Disability Living Allowance and Personal Independence Payments forms; corresponding with families; helping with our website along with the EDIN website and other general administration duties.

Jaye Dix – Administrator

Jaye works as an Administrator for the Society and previously worked as a beauty therapist. Jaye has Ectodermal Dysplasia herself and has a son.

Jaye is responsible for corresponding with our families; managing the Society’s database; monitoring Facebook and other general administration duties.