Organisation Name
Ectodermal Dysplasia Society

The Ectodermal Dysplasia Society (registered charity no: 1089135 aims to:
Support individuals, their families and friends who are affected by ED.
Obtain answers from medical professionals to members specific questions.
Support families when they approach organisations such as local authorities, social services etc by putting together a personal report explaining very simply how ED affects them.
Liaise with head teachers, health authorities and medical professionals.
Help families get the right care for their child in schools, such as full or part time carers, fans, air conditioning etc.
Help more families obtain Disability Living Allowance, Disability Carers Allowance etc.
Support members in their fundraising.
Put people in touch with each other if requested.
Find pen pals for the younger members.
Help families obtain information regarding ante-natal testing.
Put the society on the database of health authorities, NHS trusts, health organisations etc.

The Ectodermal Dysplasia Society produces a newsletter four times a year and has its own website. www.ectodermaldysplasia. org.

Opening times: 09:00 - 17:00

Areas covered - National/Europe/International.

This organisation provides support around
Personal Health Services Emotional Support Living, Learning, Working
This organisation provides support for
Disabled People Families Parents
Is there a cost for these services?
Business Hours
MondayFrom 09:00To 14:00
TuesdayFrom 09:00To 14:00
WednesdayFrom 09:00To 17:00
ThursdayFrom 09:00To 14:00
FridayFrom 09:00To 14:00

Primary Organisation Details

Primary Address Details

Address 1
108 Charlton Lane
GL53 9EA

Venue Address Details

Contact Details

Contact Name
Diana Perry
Job title / Position
Executive Trustee

Venue Contact Methods




Helpline service?

Helpline Details

Telephone number
Will calls I make to this helpline show on my bill?


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