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No Sweat? Why the heatwave can be fatal for those affected by rare condition Ectodermal Dysplasia


Glorious sunshine and summer days are welcome to many, but for our ED community it is excruciatingly distressing for families and children.

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A prenatal study for XLHED affected boys



The UK Edelife website is now live and clinical sites are open!

As you know, there is currently no treatment for XLHED……

But Pierre Fabre and the EspeRare Foundation are conducting a clinical study on the safety and possible health benefits of an experimental medicine for XLHED called ER004.

Find out more here – https://edelifeclinicaltrial.com/?

London Marathon


𝗧𝗵𝗲 𝘃𝗶𝗿𝘁𝘂𝗮𝗹 𝗶𝘀 𝗯𝗮𝗰𝗸!⁠

24 hours to complete 26.2 miles, earn a coveted TCS London Marathon finisher’s medal and be part of the world’s biggest marathon

We have 1 charity place left…….Do it your way!

You can sign up now here……
Virtual London Marathon 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.

Breakthrough in Research February 2022

Small UK Charity CelebratingDecember 2021

Rare Diseases Interview


Our CEO Diana Perry and Rick Thompson from Rare Beacon were recently interviewed by Greatest hits radio to discuss the NHS backlog, and difficulties people with rare conditions, like Ectodermal Dysplasia have faced getting appointments due to covid.

Watch here.

ED Christmas Party


We are so excited to be welcoming you all back to our ED Christmas Party this year – and in person!

Tickets are now on sale – Find out more here

Have you heard of Ectodermal Dysplasia?

mystery monday

We were SUPER excited to have featured on Medics 4 Rare Diseases #MysteryMonday recently.

Check it out – #MysteryMonday