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Who We Are

Here at the Ectodermal Dysplasia Society we have a small, friendly team of passionate individuals. Find out a little bit more about our team members below:

Diana Perry – Founder, Chief Executive and Secretary

Diana Perry, the 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. She is married to Ian and has 5 children, two of which are affected by Ectodermal Dysplasia. 

Diana has considerable experience of Ectodermal Dysplasia and her many duties include; attending conferences; making presentations to medical professionals, medical students, etc.; co-chairing the International Ectodermal Dysplasia Leaders meetings and conferences helping our Ectodermal Dysplasia communities around the world; attending school meetings and tribunals for Disability Living Allowance or Personal Independent Payment; proof reading patient information leaflets for the British Association of Dermatology; assisting with research projects into the many aspects of Ectodermal Dysplasia; liaising with families and individuals; writing articles for our monthly mailing, medical journals, information leaflets and the content of the ED Society website; liaising with medical professionals on behalf of the ED Society members; attending Trustee and Medical Advisory Board meetings.

Sue Beard, Dip. L.A.M – Finance & Website Management

Sue Beard, the Dip. L.A.M Finance and Website Management Coordinator for the Ectodermal Dysplasia Society

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 and oraganisational side of the Society; IT; management of the UK and International websites and the UK ED Society Support Fund.

Danielle Gue – Social Media and Website Coordinator 
Danielle Gue, the Social Media and Website Coordinator for the Ectodermal Dysplasia SocietyDanielle joined the Society in 2015, She previously worked in an accounts team at a hotel and had no previous knowledge of Ectodermal Dysplasia. She has 2 children.                                                                                                    Danielle is responsible for keeping our social media platforms current; building and updating our website; producing our email newsletters; corresponding with our families and carrying out other general office duties.
Jaye Dix – Family Liaison Administrator

Jaye Dix , the Family Liaison AdministratorJaye previously worked as a beauty therapist and joined the Society in 2017. Jaye has Ectodermal Dysplasia herself and has a son.

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


Ectodermal Dysplasia Society Cheltenham team. Left to right: Jaye, Diana, Sue and Danielle.
Meet the team – (l-r) Jaye, Diana, Sue & Danielle