Stay up to date with the ED Society’s latest news and events. If you would like to share a story or news item with us, please send to info@edsociety.co.uk
A prenatal study for XLHED affected boys
GREAT NEWS!!!!!!
The UK Edelife website is now live!
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 2 charity places left…….Do it your way!
You can sign up now here……
https://www.tcslondonmarathon.com/the-event/virtual-marathon/charities-with-places
Leicester Rotary Tea Party raises £2,600
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
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 Celebrating – December 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
ED Christmas Party
We are so excited to be welcoming you all back to our ED Christmas Party this year – in person, YIPPEE!
- With a swanky new venue and new entertainment we cannot wait to have everyone together again and see our ED families.
- This years party will be taking place at the gorgeous Hatherley Manor Hotel in Cheltenham – take a look here – Hatherley Manor Hotel
- We are looking forward to welcoming new entertainment to this years Christmas Party – say hello to Juggling John
- There will be fabulous face painting (for all) by Hattie, our ED annual raffle, Christmas competition and a visit from the big man himself…..Santa!
We are also super excited to be welcoming some of our Medical Advisory Board to the party, who are happy to talk with our families regarding questions the may have with genetic, dentistry, dermatology etc.
Tickets will be on sale from 3rd June 2022 – Buy here
Have you heard of Ectodermal Dysplasia?
We were SUPER excited to have featured on Medics 4 Rare Diseases #MysteryMonday in April……
Check it out – #MysteryMonday
“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 the Rarity Life Magazine, and their first Same But Different Podcast. You can listen here.