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Who We Are

Diana Perry
Chief Executive and Founder

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; proofreading 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 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

Elly 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.