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National Walking Month


Did you know, May is National Walking Month? Spring is in full swing and it is the perfect opportunity to get outside, start moving and raise money to help The ED Society support our families. 

Get involved and #WalkthisMay

Leicester Rotary Tea Party raises £2,600

tea party

The Rotary Club of Leicester recently hosted a Tea Party for 80 people at the Leicestershire County Cricket Club, which raised £2,600 for two charities. 

You can read the story here

XLHED Trials

Research logo

The recruitment stage is now open – please read the below leaflets and get in touch if you fit the criteria and wish to be a part of this ground-breaking research.

EDELIFE Information Leaflet UK 2022

Patient Invitation Letter UK 2022

Information for Families UK 2022

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

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.

Our latest column is now live – February 2022

Small UK Charity CelebratingDecember 2021

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


Save the date – our Christmas Party is coming back this year, with new entertainment and a new venue!

We are SO excited to begin planning and look forward to seeing you all there.

Watch this space!


Have you heard of Ectodermal Dysplasia?

mystery monday

We were SUPER excited to have featured on Medics 4 Rare Diseases #MysteryMonday in April……

Check it out – #MysteryMonday

Free Genetic Testing

genetic test

Great news ED community…..

Genetic testing is now being funded by NHS England – making it FREE and resulting in no more difficulty obtaining a referral for those affected by Ectodermal Dysplasia! Find out more:

THIS amazing, award-winning image shows a brave girl battling a genetic condition.


Rachel Stewart Illingworth won a prestigious award at the annual Wedding and Portrait Photographers International in America.

Rachel was awarded the First Place Grant Award in the Portrait, Children and Teenager category for her picture of Hannah Harpin, 19, who battles the rare genetic condition ectodermal dysplasia.

Photographer wins top award – March 2022

“Same, But Different”


We have known Hannah Harpin since she was 6 years old…… ⁠

All of us here in the ED community are super proud and excited to see her flourish in the modelling world and be able to follow her journey – you are smashing it!!!

Hannah features in this months Rarity Life Magazine, and their first Same But Different Podcast. You can listen here.