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 email@example.com
Stay Informed and Stay Safe
For all the latest information and updates regarding Ectodermal Dysplasia and the coronavrius pandemic, please visit our dedicated Covid Updates page.
Women’s World Snooker Champion teams up with The ED Society for tilt at the World Professional Championship
Today we heard some amazing news….Reanne Evans has been awarded an MBE. This is well deserved and all of us at The ED Society send our congratulations.
We want to thank Reanne for showing support to us over the last couple of months, by wearing the EDS Logo and helping us to raise awareness of Ectodermal Dysplasia.
We are excited to announce that Reanne Evans has chosen the ED Society to team up with, and help raise awareness of Ectodermal Dysplasia whilst competing in this years World Snooker Championship – Find out more here
London Marathon 25th April 2021
Great news – the ED Society have managed to get a place for next year’s London Marathon, which has proven to be a really beneficial fundraiser to the Society in previous years.
If you think you would like to run the London Marathon on behalf of the ED Society, and you are confident you can drum up some big support and donations, please get in touch.
The place costs the ED Society £400, so it would be great if you know you will be able to raise more than this for us.
We will announce who the position will go to in August after a live draw.
Please let us know your interest by emailing firstname.lastname@example.org
EspeRare Receives FDA Breakthrough Therapy
Thank you to EspeRare for their amazing work on continuing to research and develop a potential in-utero therapy that would provide functioning sweat glands for those born with XLHED – This is exciting research news to be sharing with you all
“This innovative treatment approach has the potential to fundamentally change the lives of these patients and may also pave the way for other prenatal treatments to correct genetic diseases before birth”
Bullied Because Of My Rare Genetic Condition
We are super proud of Hannah Harpin, who we have know since she was 6 years old, for opening up about her Ectodermal Dysplasia (Haywells syndrome) in a You Tube documentary.
“AN 18-YEAR-OLD who was bullied over her rare genetic condition – that severely affects her appearance – has silenced her critics by embracing her disorder on social media”
After facing many struggles throughout her school years, Hannah is now in college and has been offered a job mentoring disabled college students. Keep up the good work Hannah, you are smashing it.
Follow more of Hannah’s story: https://www.instagram.com/hannahharpin/
Our children’s book Everybody’s Different is now available to buy on Amazon.
This introduction to Ectodermal Dysplasia has been designed for children age 4+, whether they are affected by ED or not, and allows parents and schools to explain the condition in child-friendly terms. It facilitates empathy and gives children the ideas and motivation to then help their peers.
Remember to sign up to Amazon Smile too and you can create a FREE donation for the ED Society!
October Charity Update 2020
Our charity update for the year is now available to download here.
What a crazy, busy year we have all had! We have lots to update you on – happy reading!
The Gift Aid Emergency Relief Campaign 2020
We are proud to be ambassadors for the The Gift Aid Emergency Relief campaign, which is calling for a temporary change in the rate at which Gift Aid is paid out. This is to help charities access vital funds they need to survive, at a time when they have never been more needed.
Charities are anticipating a 24% loss in income this year which would mean a £12.4 billion loss to the sector as a whole. The proposal of a two-year Gift Aid Emergency Relief scheme is modelled on a previous successful Gift Aid Transitional Relief in 2008 (which saw Gift Aid increase to 28% for three years).
For example, the change would mean a £100 donation from a UK taxpayer would increase to £133.33 for the charity once Gift Aid has been claimed (compared to £125 as it is currently).
You can find more information on the campaign and how you can help here.
13th August 2020 – UPDATE 24th August
We are amazed by everyones support and generosity since asking for help in regards to our current computer problem….. we have surpassed all expectations and our initial target, and it is all down to you!
Your hard work & determination to help us during this hard time has raised £5800 for the Society……WOW – THANK YOU!
We have had a disastrous week in the ED office – two of our computers, both of which are 6 years old have broken.
We are not in a position to financially to replace these due to the ongoing Covid pandemic that has been hitting everyone, including charities like us, hard.
Our fundraising and donations are under by 80-90% on last year and this has put us in an unfortunate situation financially. Two members of staff are now left without a computer and are currently having to use old laptops from home – which is not practical nor efficient long term.
We urgently need donations to replace these as soon as possible as the level of support we can offer at the moment is now being affected. The cost to replace both of these will be just under £1000. Due to not benefiting from any government funding or successful grant applicatons we are turning to you our ED community to help us continue to support you effeciently.
Can you help to “ACT It Out”
UPDATE 24th August –
A few weeks back we reached out to our ED community to help Appearance Research with the ACT It Out mobile app, have you taken part? We would be interested to know if any of our ED families are getting involved?
Researchers from the Centre for Appearance Research at UWE Bristol are looking for UK-based people with ED who are experiencing psychological / social difficulties related to looking different, to test ACT It Out, a prototype mobile app. ACT It Out is designed to help adults (18+) who have any different or unusual appearance live a fulfilling life by doing more of what matters to you and reducing the impact of appearance concerns.
If you are interested and would like more information, please email Fabio.email@example.com, call Fabio on 0117 32 83882 or visit https://uwe.eu.qualtrics.com/jfe/form/SV_3aSn5rh9N1cIuLr to register your interest.