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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.

Danielle Gue – Fundraising and Marketing Coordinator 

Danielle 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; updating our website; producing our mailings/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.

Elly Lomas – Finance Administrator

EllyElly joined the ED Society in January 2022. She has previously worked for Whitbread and British Telecom and is looking forward to learning more about Ectodermal Dysplasia.

Elly has a teenage son.

She has joined the team as finance administrator and is responsible for performing a variety of financial and administrative duties.