01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Email: diana@edsociety.co.uk
Address: Unit 1 Maida Vale Business Centre, Mead Road, Cheltenham, Glos. GL53 7ER
Telephone Number: 01242 261332
Registered Charity Number: 1089135

Prevalence of Ectodermal Dysplasia:

Variable according to the specific type of Ectodermal Dysplasia. Patterns include spontaneous mutations, autosomal dominant, autosomal recessive, X-linked dominant, X-linked recessive. For Hypohidrotic Ectodermal Dysplasia, inheritance is usually X linked but can be autosomal dominant or autosomal recessive.

What is Ectodermal Dysplasia?

Ectodermal Dysplasia is not a single disorder, but a group of closely related conditions of which more than 170 different syndromes have been identified. The Ectodermal Dysplasia’s are genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands. Depending on the particular syndrome Ectodermal Dysplasia can also affect the skin, glands, the lens or retina of the eye, parts of the inner ear, the development of fingers and toes, the nerves and other parts of the body. Overheating and hypothermia caused by lack of temperature control are life-threatening.

What support is available?

The ED Society is a national charity with strong European and International links
We are dedicated to improving the health and wellbeing of people whose lives are affected by Ectodermal Dysplasia. We work together with people who have the condition, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of Ectodermal Dysplasia.

The ED Society promotes:

• the further advancement of education of the medical profession and the general public into the Ectodermal Dysplasia’s and the implications for the family
• research into the causes, effects, treatment and management of Ectodermal Dysplasia and to be informed of the results thereof
• obtaining funds from grant-making trusts and local government to give the Society proper status for fundraising from the general public
• a positive supportive network of parents, individuals, families and professionals in order to share ideas, experiences and give emotional support
• the continuation of helping the hundreds of individuals and families in search of support, information, direction, advice, etc.

The ED Society hold the largest database of Ectodermal Dysplasia members, syndromes, symptoms and information in the UK, and their Chief Executive Officer is the chair of the International Ectodermal Dysplasia Leaders

Information provided by the ED Society, 17th March 2017

Breaking Down Barriers Project Overview:

The ED Society aim to “raise awareness, improve diagnosis and develop an understanding of the needs of the Ectodermal Dysplasia community”. This will be achieved through the following:
• Review current membership – gather and document demographics of individuals and families and gain a greater understanding of the people they support
• Consultation – with members to determine what additional information they require. Work with a PhD student to improve engagement with young adults to develop a greater understanding of ‘Living with Ectodermal Dysplasia’
• Review current literature – website and leaflets to ensure they are inclusive and accessible
• Raising awareness – use the knowledge gained from the above to raise awareness with a particular focus on ethnic minority communities, Genetic Departments and Dentists

Year 2 Project
There was a delay to the start of their year 1 project, therefore, they will aim to submit an action plan in February with a view to starting their year 2 project in March 2018.