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Meet the Team

Diana Perry
Chief Executive and Founder

As Founder and CEO of the Ectodermal Dysplasia Society, Diana has worked on a full-time voluntary basis since 1996. She is married to Ian and has 5 children, two of whom are affected by Ectodermal Dysplasia. 

She has gained considerable experience of Ectodermal Dysplasia (ED) over the years, and having two affected children has provided her with first-hand experience, empathy, compassion and the personal touch.

Diana is driven by her passion to help the ED community cope with their daily struggles. She fights to ensure individuals and families have all the information they need to receive benefits they are entitled to, and a duty of care in school/the workplace. She oversees everything the Society does including research, and any international collaboration.

She’s the energetic force in the ED Community leading with her heart in all that she does.

Outside of work......

"I enjoy spending time with family, doing crosswords and puzzles, and eating chocolate!"

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Danielle Gue
Fundraising and Marketing Officer

Danielle joined the Society in 2015 as an Administrator. Having many job title changes over the years, she is now the Society's Fundraising and Marketing Officer.

She previously worked in an accounts team at a hotel and had no previous knowledge of Ectodermal Dysplasia before she joined the charity.

Danielle lives with her husband, 2 young children and their dog Poppy.

Danielle is responsible for keeping all our social media platforms current; updating our website; producing mailings and marketing the charity to help bring Ectodermal Dyplasia and the Society to the forefront.

Outside of work......

"I like to keep fit by attending a boot camp class twice a week, as well as being part of a Netball fun league. On weekends you'll find me enjoying family time, such as countryside walks, days out and being a football mum at my sons matches."


Jaye Dix
Family Liaison Officer
Jaye joined the Society in 2017 as family liaison/administrator, and is now the Family Liaison officer. She previously worked as a beauty therapist.
Jaye lives with her partner and 2 young children.
She is responsible for corresponding with our ED families; managing the Society’s database; monitoring our private Facebook support group; assisting families with letters of support and other general administration duties.

Outside of work.....

"I love spending time with my family and having days out with my children. I enjoy relaxing at home, but also going out with friends! I eat A LOT of chocolate!"


Elly Lomas
Finance Officer

Elly joined the ED Society in January 2022. She has previously worked for Whitbread and British Telecom in Customer Service & Training roles.


She has joined the team as Finance Administrator and is responsible for performing a variety of financial and administrative duties, including account reporting to the Trustees and helping our ED family members with advice . Although she did not have any previous knowledge of Ectodermal Dysplasia, she has known the team for a number of years.

Elly lives with her a teenage son and their Jack Russell ‘Peanut’.

Outside of work......

"I enjoy cooking and gardening. At weekends you’ll find me at my sons rugby training or traveling to his away games. I much prefer Autumnal months, and like to take country walks followed by a stop for coffee & cake along the way."

Kelly Phelan
Office Administrator

Kelly joined the ED Society in Summer 2022. She had gained some experience earlier in the year by working on a volunteering basis within the office.

Previously Kelly has worked at The Co op and Chelsea Building Society.

Kelly's current role is to assist with general administration tasks and to assist the ED team.

Kelly lives with her husband and has 2 young children.

Outside of work.....

"I enjoy spending time with my 2 children and husband for days out, holidays or chilling on the sofa. I like to watch the rugby and darts and when given the opportunity to watch it live. Socialising with friends and family is important to me."