has been added
The ED Society
Our vision is that every individual and family affected by Ectodermal Dysplasia is equipped with the knowledge needed to manage Ectodermal Dysplasia effectively and live life to the full; and that medical professionals have the information and understanding they need to support those affected.
Media Coverage
ED Society - a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED)
Rare diseases: we need to think about climate change too - ED SocietyWe are excited to share that our CEO and Founder, Diana, has been featured in the September issue of The Lancet Neurology. Diana appears alongside other leading professionals in the field for their contributions...
Charity Today News
Why the hot weather can be fatal for those affected by rare condition Ectodermal Dysplasia | Charity Today NewsThe ED Society is a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED).
Third SectorMainNet
Soaring inflation could be worse for the sector than the Covid-19 pandemic, charities warnedThe rate of inflation hit a 40-year high this month, raising further concerns about the cost of living
Charity Times
Charities face ‘tidal wave of demand’ as inflation hits 40-year highCharities running food banks and supporting people’s mental health are most at risk of an
M4RD
The ED Society - M4RDThe Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED). They work together with people who have […]
Daily Mail
Brothers with rare disease where hair, teeth and nails grow abnormallyRichard McDonald, six and his brother Lennon, five, from Corby, Northhamptonshire, suffer from Ectodermal Dysplasia, which causes their hair, teeth and nails to grow abnormally.
WalesOnline
Why the heatwave can be a nightmare for people with this rare diseaseEctodermal Dysplasia can cause overheating and even death in babies, but some doctors don’t recognise the symptoms
Same but Different
Rarity Life Sign Up — Same but DifferentSame but Different is a community interest company that uses the arts to raise awareness of disability and counteract prejudice. We encourage people to look beyond first impressions and provides signposting...
Alopecia UK
Putting your face in someone else’s handsA qualitative study of medical tattooing in women with hair loss
Daily Mail
Woman become a model despite suffering from a rare conditionHannah Harpin, 18, from Mirfield, West Yorkshire, was born with Hay-Wells Syndrome. Despite being deaf and bald, she has signed with a UK modelling agency to help fight discrimination.
Hartlepool Mail
The brave little four-year-old who went through heart surgery - and now he’s coping with a rare disorderCourageous Kristin Creamer is the epitome of a little battler.
Charity Today News
The ED Society: Small UK charity celebrating 25th anniversary | Charity Today NewsDiana Perry CEO writes
Charity Today News
The ED Society: Breakthrough in research for Ectodermal Dysplasia | Charity Today NewsThis same year an international team of researchers, one of whom, Professor Angus Clarke, is the Chairman of the ED Society’s Medical Advisory Board,