Who we are

Diana Perry – Chief Executive and Secretary

Diana PerryDiana is the founder of the Ectodermal Dysplasia Society and has been with the group 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 has many duties; she attends conferences; makes presentations to medical professionals and medical students; co-chairs the international ED Leaders meetings and conferences whereby we are able to help our ED communities around the world; attends school meetings, tribunals for DLA or PIP with you, proof read patient information leaflets for the British Association of Dermatology, assist with research into aspects of ED, liaise with families and individuals, write articles for our newsletter and medical journals, write information leaflets and the content of the website, liaise with medical professionals on your behalf, attend 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 had previously worked as a Legal Accountant for a large firm of Solicitors and has over 30 years accounts and computer experience.

Sue manages the office and deals primarily with the financial side of the Charity, IT, management of the UK  and the  EDIN (Ectodermal Dysplasias International Network) websites and the UK Support Fund.

Danielle Gue – Senior Administrator

Danielle works as a Senior Administrator for the Society and previously worked as part of an accounts team at a hotel. Danielle had no previous knowledge of ED 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 (Ectodermal Dysplasias International Network) 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 she has a son (who does not have Ectodermal Dysplasia).

Jaye is responsible for corresponding with our families, managing the Society’s database and other general admin duties.