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Friends of the ED Society

young boy affected by ed at the zoo with a rhino

As a charity we provide free information and support about the Ectodermal Dysplasias to individuals, families, carers, professionals, schools and all other supporters.

We provide free services for people affected by Ectodermal Dysplasia, carers, schools, friends and family members – in fact, anybody whose life is affected by ED.

Please be aware that as we are a charity based in the UK and the Republic of Ireland, not all of our information may be relevant if you are registering from overseas.

Regular donations to the ED Society is the best way to secure our future, enabling us to continue providing such support and services to individuals and families.

We are a non-profit organisation who depends solely on donations and fundraising for its existence.

You can help by:

  • becoming a friend of the ED Society
  • donating
  • setting up a standing order
  • leaving a legacy
  • fundraising
  • volunteering
  • corporate support
  • distributing leaflets to schools/professionals

What are the benefits to you of setting up a regular payment? You will:

  • retain all the same access

  • have more flexibility on how much you would like to support us financially

  • have an opportunity to apply to the Support Fund (UK only)

  • have access to support when completing Disability Living Allowance, Personal Independent Payment and Blue Badge application forms, together with assistance for appeals and tribunals
  • receive mailings packed with the latest events and news
  • gain access to our medical specialist network
  • know that donations will go into our support fund to help with air-con units and fans, humidifiers, wigs/hair pieces, and assistance with travel to medical specialists and more.  

The positive effects this will have for the ED Society are:

  • it will be much simpler for those who may not be personally affected by ED to support us, such as extended family, friends, and colleagues
  • significantly simpler to manage
  • less administration for the ED team, resulting in more time to concentrate on support for our increasing community.

“You have been the light in my darkness”

How your donations help

young boy showing teeth before and after denturesBy becoming a friend of the ED Society, you are giving a voice to the thousands of people in the UK and overseas who live with Ectodermal Dysplasia, by pushing for change in the recognition of ED and by sharing their experiences.

Share far and wide with family, friends, neighbours and colleagues and become a “Friend Of” the ED Society today.


Check out our new donation page here, which enables you to set up a monthly direct debit.