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XLHED Trials

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The XLHED clinical trial is open to pregnant women who have not yet reached the 23rd week of pregnancy, have a genetic confirmation of their XLHED status and have their unborn son affected.

Pregnant women will be enrolled in the study at investigational centers in Europe and in the USA, under the care of clinical experts.

The trial website is currently being developed, but if you are interested in knowing more about the EDELIFE clinical trial, please visit www.clinicaltrials.gov or contact the physician, principal study investigator Prof. Dr. med. Holm Schneider at holm.schneider@uk-erlangen.de

Fundraising in 2022


After starting 2021 in lockdown, it was wonderful to see so many events returning and our ED community back at it, fundraising across the country for Ectodermal Dysplasia.

February is Ectodermal Dysplasia Awareness Month, and there will be big celebrations throughout the year for the Queen’s Platinum Jubilee in June 2022.

The TCS London MarathonThe Big Half and Swim Serpentine are all coming back in 2022.

Looking ahead to Fundraising for ED in 2022….

Read our Charity Today Column

As official Charity partners of UK Charity Week campaign, we are super excited to announce the ED Society will now hold a monthly column spot.

Take a few moments to read our first column…..and we will keep you posted with all our latest articles!

Small UK Charity CelebratingDecember 2021


What are you doing this February?

Each year, we ask our ED community to unite with others affected by Ectodermal Dysplasia to help us raise awareness of this rare condition.

Ectodermal Dysplasia Awareness Month is celebrated globally during February. The more of us who join together….. the bigger impact we can make.

Find out more and get involved here.

Say Hi To Elly…..

After 18 years with us, Sue has decided to leave the ED Society. We’re grateful for the work she has done to support everyone within the ED community, and we’re pleased to welcome Elly in her place.

Meet the team

Welcome to the ED Society Francesca!

Up and coming British tennis player, Francesca Jones, has agreed to come on board as the Patron of the ED Society.

Francesca was born with Ectrodactyly Ectodermal Dysplasia (EEC)

Find out more about Fran here – We Welcome Up and Coming Tennis Player as Patron of the ED Society

Can you recommend a Doctor or Specialist?

recommend specialist

Sadly, many professionals have never heard of Ectodermal Dysplasia…..but maybe you can tell us a great dentist, dermatologist, geneticist etc. you have visited?

We can then update our professionals list which we use to support our ED community. Head over to Doctor and Specialist Recommendations

We are very fortunate to have members who wish to share their stories and ED journeys with us, either by writing articles for our newsletters or writing their own blogs! 

Visit our Parents page to have a read for some extra reassurance and support that you are not alone!