Debra Uk

We're delighted that Falklands Veteran Simon Weston CBE is DEBRA’s new President! Simon will raise awareness of EB and DEBRA as well as supporting fundraising to provide care and support for the EB Community and fund research into effective treatments and a cure. https://www.debra.org.uk/…/200-falkland s-veteran-simon-west…

This time of year can be hard for everyone and debts can slowly mount up without you noticing or without much control. However, it is important to know that there is help out there and that you are not alone. Read how you can get out of debt and find the support available to you. http://ow.ly/8O2r30mKEPC

We're funding a clinical trial to evaluate the impact of cannabinoids (a component of the cannabis plant) as a potential treatment for two of the most debilitating symptoms of EB, pain and itch. The goal of this research is ultimately to make a more effective form of pain and itch relief available to people suffering from EB, and transform quality of life the for half a million people worldwide suffering from the condition. For more detailed information about the trial, please visit www.debra.org.uk/cannabinoids #FightEB ITV News

#GivingTuesday is the worldwide day for giving back. Registering for a Give as you Live account, selecting us as your charity and raising vital funds for us every time you shop is totally FREE! https://www.giveasyoulive.com/join/fighte b

Got your eye on a bargain this #CyberMonday? You could raise free funds for us when you checkout just by visiting Give as you Live. Choose us as your charity and you'll earn a donation that supports our work every time you shop: https://www.giveasyoulive.com/join/fighte b #FightEB

Join us for a Superhero extravaganza at the DEBRA Members' Weekend 2019! Meet DEBRA Members of all ages and backgrounds from across the UK, get the latest information from EB researchers and get to know the DEBRA Superhero Support Team. Bookings are now open! https://www.debra.org.uk/members-weekend- 2019

Check out this new guide on pregnancy and childbirth for those with EB by the team at Guy's and St Thomas' Hospital in partnership with DEBRA UK! https://www.debra.org.uk/pregnancyandchil dbirth

DEBRA members Scottie and specialist EB podiatrist Mark O'Sullivan raising awareness of EB and DEBRA at a podiatry conference! Great way to #FightEB at #copconference18

#BlackFriday is here and there are offers galore all over the internet! Raise funds for us for FREE with every saving when you shop via Give as you Live! https://www.giveasyoulive.com/join/fighte b #FightEB

Over the last 40 years, we've funded research into the causes and possible treatments for EB. See how far EB #research has progressed at http://ow.ly/QxIR30mGqBF #FightEB

Congratulations to Lee on completing the Supernova 5k!
"EB has a massive impact on my daily life. I suffer a lot with my feet, hands and face. Obviously with my running I suffer from blistering on my feet and this does impact on the distances I can run. It’s stopped me mid-run in the past and I’ve had to get picked up as I couldn’t walk to the finish which is heartbreaking”
You can still donate to his fundraising page and help him reach his target - https://www.justgiving.com/fundraising/le e-thompson-halls1… #FightEB

The DEBRA Travel and Independence Grant Scheme aims to enable people with EB to live a more independent and adventurous life and to help transform dreams into reality. To find out more and to apply please visit https://www.debra.org.uk/financial-help/t ravel-fund

'I never imagined I'd meet so many other people suffering from EB. The support from DEBRA has been amazing - knowing they are able to help whenever we need it has made such a huge difference to our lives' Read Ayaan's story now and share to #FightEB https://www.debra.org.uk/ayaan

Calling all bloggers! #EB2020 is looking for several volunteer bloggers. Please contact comms@ebworldcongress.org for more information. More information about EB 2020 can be found here: https://www.debra.org.uk/healthcare-profe ssionals/eb-2020

Treat us when you treat your loved ones this #Christmas. Shop at 4,200+ retailers for your gifts via Give as you Live and raise vital donations every time you shop! https://www.giveasyoulive.com/join/fighte b #FightEB

We’re celebrating our 40th anniversary – 40 years of helping people suffering from EB and funding research into effective treatments and a cure for the condition. Read more about our story on our website! http://ow.ly/MpyM30mAoeO

Did you hear Freddie's story on BBC Radio 4 as part of the #R4Appeal? You can listen to his story on the BBC Iplayer now. Don't forget to share with your friends and family to #FightEB http://ow.ly/OUFI30muOp8 BBC Charity Appeals

visited your shop in Rugeley Today with my grandson who as eb ,thank you,staff made use feel very welcome and will be back to visit soon x

The shop in Little Lever is very good great layout Julie and Jane are the most friendly and welcoming staff I've come across great prices I would recommend to people

My two daughters have EB simplex. My eldest is 9 youngest is 3, I have a son 7 who hasn't got it. Debra have been amazing for us, if anyone needs any tips re clothing / school or just wants to speak with another parent contact me xx

My son Max, 12, and I both have EBS, your organisation were so helpful when I first had him diagnosed. Max is a budding drummer he had band practice and lessons back to back the other week so was playing for almost 3 hours, he came out with blistered hands and tender feet but played through the pain because he enjoys it so much. He is so brave and I can't tell you how much I admire his spirit it not letting EBS spoil his dream. Thank you for being there! Just need to order some more Snogg bandages to strap up his hands. X

My daughter has got eb simplex she's only three but people at debra have been great helping us to secure funding for a new buggy. And they go out of their way to make our little girls journey in life a little easier.

My daughter has EB simplex 'butterfly skin that's what I got mum' as she used to say but little did we know what was ahead...everyone just assumed 'she'd grow out of it' explaining all the time is endless to those whom just think it's blisters on her skin 'no big deal right' thats not a disability!...And for a while i wanted to believe that it was true but as time went on now i know it is, it stops her from doing alot of everyday things that we whom do not have it all take for granted but then learned along the way that NO it just stops her from doing them as quickly as other people.. yes its changed our lives..yes we have to rethink plans before going anywhere...yes i worry for her future ie working...yes she has this condition for life and does her best to do everything she can just a little slower she is my hero with what she has to endure and this group has given us valuable info and inspired us with so many beautiful people whom suffer much worse than she although I was told off by consultant for saying this 'it's bad for her' he said but she knows how lucky she is by reading & watching some of the amazing stories of others like her and how much they can achieve thankyou, you truly are amazing each and everyone one.

My daughter and 2 sons have eb simplex and so do I, they are grown ups now my daughter has a daughter who is 6 years old she has eb simplex as well. I really don't know what I would have done without the fantastic support I had from DEBRA when my children were growing up I couldn't have done it on my own.

I wouldn't be where I am today without support from Debra! !!

I'm a carer to 2 children with ddeb and had so much help with forms, support and advice with housing issues, a grant and as a family have enjoyed using 2 holiday homes!!

Am grateful for everything they've done for us xx

I went to Ashford Kent branch again.

Wow again I was not disappointed. The staff are great & the items are such good quality.

I bought a mattress & water filter... Bargain prices which helped immensely as saving was long & hard enough. I’m already feeling the benefits.. The comfort of a good nights sleep on a stable mattress & able to have a cuppa without the danger of a heavy Kettle when I have my dizzy spells. Thank you. I will be back;-)

I suffer with EB myself and I wouldn't be without Debra! Helped me through some seriously hard times. So greatful�

Debra has helped us out no end. Supporting us at our toughest times. Brought things to sooth our daughters skin. Also items to help prevent blistering. Our daughter was born with eb simplex . She didn't get the diagnoses until she was nearly one. We had a hard time trying to prove we wasn't causing these blisters. As soon as she was diagnosed Debra helped us emotionally, prove to the authorities that it isn't us causing this. Our community helper is now helping our daughters nursery to understand the condition and what they can do to help our daughter while she is in their care. I can't thank Debra enough for their support. We are now running a charity fishing match to give some thing back :)

DEBRA has saved my life so many times over the years! EB is not a condition to take lightly and without DEBRA and my nurses in st thomas hospital in London i really dont know where i would be today!

Since moving to bournemouth we have become very close to the Winton shop and worked along side Tracey the manager on a number of occassions and she has always been so supportive and amazing to myself and my family! I look forward to the future working together to help raise awareness the charity needs!

Both my children have EBS localised. They only have blistering on their feet and it's worse in the hot weather. People who don't suffer with it do not understand the pain in which they are in and the size of the blisters which have to be sniped or popped and then dressed to stop infections. It's horrible to watch your children not being able to have fashionable shoes etc., even socks have to be turned inside out so that the seam does not cause trauma to the feet.

All the staff and debra gosh are the best in the world thay go out to help and support whenever and wherever possible giving you 100 and 10% of the time

A fantastic organisation that is making a real difference to people living with EB. I am privileged to be running a Debra shop in Brighton and in some small way being able to contribute to the Charities ultimate goal.

I have donated lots of items to my local shop in Wigan, WN3 area due to moving house, I have also bought quite a few items, however lately I’m finding the prices to be slightly high ?? Not sure who decides how much an item should cost but I think £3.99 for a ladies t-shirt not even a high end brand is a bit pricey 😳 just thought I’d say, can’t comment on other branches.

You should look on the 'Guildford Past and Present' Facebook page to see all the unhappy people who have taken good donations to the Merrow Debra, only to be spoken to very rudely or turned away. It's happened to me. If they don't want donations, there are polite ways of telling people. No customer service skills whatsoever up there! Woking Hospice Shop a few shops along are much nicer so I give to them. But Debra are missing out!

Very rude lady at Guildford just been there to drop some really good quality clothes and ornaments, cushions and shoes and she asked me if I hade come back from a car boot sale and if so she couldn't sell it if we hadn't sold it!! Try to help these charity's and they are so fussy. Won't be bothering again

I have huge sympathy for people with this condition, so I just spent money in a DEBRA charity shop in Birmingham. However, I will never do so again, as I have discovered that DEBRA are happy to use animals in research. To torture one living creature in the hope it eventually might help another is despicable, sickening and totally unnecessary. I am beyond disappointed about this. So many other charities choose to use humane methods instead, because they know animal experimentation is so unnecessary, unreliable and wrong. I really thought DEBRA would be one of the enlightened charities.