DEBRA UK
@charitydebra.bsky.social
DEBRA is a UK national medical research charity and patient support organisation for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB).
Find out more: https://bit.ly/4jaRfQG
Find out more: https://bit.ly/4jaRfQG
📍 Last night, we were proud to host a special reception at Scottish Parliament to share the latest global EB research priorities and highlight the urgent need for improved access to specialist EB healthcare in Scotland.
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
November 13, 2025 at 4:45 PM
📍 Last night, we were proud to host a special reception at Scottish Parliament to share the latest global EB research priorities and highlight the urgent need for improved access to specialist EB healthcare in Scotland.
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
🧬 Join us for our next Research & Health Webinar on Wednesday 5th November, 8pm
Dr. Cory Simpson will talk about creating human tissue models of epidermolysis bullosa simplex to discover new therapeutic strategies.
👉 Register or catch up here: https://bit.ly/45SbKNi
Dr. Cory Simpson will talk about creating human tissue models of epidermolysis bullosa simplex to discover new therapeutic strategies.
👉 Register or catch up here: https://bit.ly/45SbKNi
November 2, 2025 at 5:31 PM
🧬 Join us for our next Research & Health Webinar on Wednesday 5th November, 8pm
Dr. Cory Simpson will talk about creating human tissue models of epidermolysis bullosa simplex to discover new therapeutic strategies.
👉 Register or catch up here: https://bit.ly/45SbKNi
Dr. Cory Simpson will talk about creating human tissue models of epidermolysis bullosa simplex to discover new therapeutic strategies.
👉 Register or catch up here: https://bit.ly/45SbKNi
This #EBAwarenessWeek, we want to say a huge thank you for your support to help us #FightEB and work towards our vision of a world where no one suffers with EB. 🦋
Reshare this post & find out how you can get involved and support the EB community here: https://bit.ly/4grgP1S
#EBAW #EBAW2025
Reshare this post & find out how you can get involved and support the EB community here: https://bit.ly/4grgP1S
#EBAW #EBAW2025
October 31, 2025 at 3:53 PM
This #EBAwarenessWeek, we want to say a huge thank you for your support to help us #FightEB and work towards our vision of a world where no one suffers with EB. 🦋
Reshare this post & find out how you can get involved and support the EB community here: https://bit.ly/4grgP1S
#EBAW #EBAW2025
Reshare this post & find out how you can get involved and support the EB community here: https://bit.ly/4grgP1S
#EBAW #EBAW2025
In 40 years, DEBRA UK has invested £22m in pioneering research 🧬
We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries.
Read more in our latest research round-up: https://bit.ly/4njcikI
#EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK
We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries.
Read more in our latest research round-up: https://bit.ly/4njcikI
#EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK
October 29, 2025 at 7:23 PM
In 40 years, DEBRA UK has invested £22m in pioneering research 🧬
We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries.
Read more in our latest research round-up: https://bit.ly/4njcikI
#EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK
We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries.
Read more in our latest research round-up: https://bit.ly/4njcikI
#EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK
🧵 Flip your clothes Inside Out for EB!
Even seams can cause pain for those with EB - wearing clothes inside out helps protect fragile skin.
👚 Join us, DEBRA International & DEBRA Ireland for #EBAwarenessWeek2025
📅 Wear on any day that works
💻 Fundraise: https://bit.ly/437XHkQ
#InsideOutForEB
Even seams can cause pain for those with EB - wearing clothes inside out helps protect fragile skin.
👚 Join us, DEBRA International & DEBRA Ireland for #EBAwarenessWeek2025
📅 Wear on any day that works
💻 Fundraise: https://bit.ly/437XHkQ
#InsideOutForEB
October 16, 2025 at 3:49 PM
🧵 Flip your clothes Inside Out for EB!
Even seams can cause pain for those with EB - wearing clothes inside out helps protect fragile skin.
👚 Join us, DEBRA International & DEBRA Ireland for #EBAwarenessWeek2025
📅 Wear on any day that works
💻 Fundraise: https://bit.ly/437XHkQ
#InsideOutForEB
Even seams can cause pain for those with EB - wearing clothes inside out helps protect fragile skin.
👚 Join us, DEBRA International & DEBRA Ireland for #EBAwarenessWeek2025
📅 Wear on any day that works
💻 Fundraise: https://bit.ly/437XHkQ
#InsideOutForEB
Today is #WorldMentalHealthDay2025 🩵
A reminder that mental wellbeing matters just as much as physical health - especially for those living with or caring for someone with EB.
🦋 You’re never alone in this journey.
Find out how we can support you: https://bit.ly/46Hzap0
A reminder that mental wellbeing matters just as much as physical health - especially for those living with or caring for someone with EB.
🦋 You’re never alone in this journey.
Find out how we can support you: https://bit.ly/46Hzap0
October 10, 2025 at 9:00 AM
Today is #WorldMentalHealthDay2025 🩵
A reminder that mental wellbeing matters just as much as physical health - especially for those living with or caring for someone with EB.
🦋 You’re never alone in this journey.
Find out how we can support you: https://bit.ly/46Hzap0
A reminder that mental wellbeing matters just as much as physical health - especially for those living with or caring for someone with EB.
🦋 You’re never alone in this journey.
Find out how we can support you: https://bit.ly/46Hzap0
In 2024, you raised just over £92,500 through gift-aided donations! ✅
Gift aid increases the value of your donation by 25%, at no extra cost to you.
If you’re a UK tax player, please #TickTheBox this #GiftAidAwarenessDay & complete our gift aid sign-up form if you haven’t already: bit.ly/3XOxlkr
Gift aid increases the value of your donation by 25%, at no extra cost to you.
If you’re a UK tax player, please #TickTheBox this #GiftAidAwarenessDay & complete our gift aid sign-up form if you haven’t already: bit.ly/3XOxlkr
October 9, 2025 at 4:08 PM
In 2024, you raised just over £92,500 through gift-aided donations! ✅
Gift aid increases the value of your donation by 25%, at no extra cost to you.
If you’re a UK tax player, please #TickTheBox this #GiftAidAwarenessDay & complete our gift aid sign-up form if you haven’t already: bit.ly/3XOxlkr
Gift aid increases the value of your donation by 25%, at no extra cost to you.
If you’re a UK tax player, please #TickTheBox this #GiftAidAwarenessDay & complete our gift aid sign-up form if you haven’t already: bit.ly/3XOxlkr
This #WorldSightDay, we're highlighting an incredible research project seeking to transfer an eye-drop technology that was developed almost ten years ago to benefit EB patients. 🔬
Read more on Prof Grover's blog now 👉 https://bit.ly/4m5yWfC
Read more on Prof Grover's blog now 👉 https://bit.ly/4m5yWfC
October 9, 2025 at 11:50 AM
This #WorldSightDay, we're highlighting an incredible research project seeking to transfer an eye-drop technology that was developed almost ten years ago to benefit EB patients. 🔬
Read more on Prof Grover's blog now 👉 https://bit.ly/4m5yWfC
Read more on Prof Grover's blog now 👉 https://bit.ly/4m5yWfC
🛍️ Did you know you can support DEBRA UK every time you shop online - at no extra cost to you?
Every donation helps us continue providing vital support to the EB community. 💙
It only takes a minute to get started - and makes a lasting impact.
Sign up today: https://bit.ly/4mlbTOb
Every donation helps us continue providing vital support to the EB community. 💙
It only takes a minute to get started - and makes a lasting impact.
Sign up today: https://bit.ly/4mlbTOb
October 8, 2025 at 7:19 PM
🛍️ Did you know you can support DEBRA UK every time you shop online - at no extra cost to you?
Every donation helps us continue providing vital support to the EB community. 💙
It only takes a minute to get started - and makes a lasting impact.
Sign up today: https://bit.ly/4mlbTOb
Every donation helps us continue providing vital support to the EB community. 💙
It only takes a minute to get started - and makes a lasting impact.
Sign up today: https://bit.ly/4mlbTOb
🦋 Unlock the full power of your DEBRA membership in this exclusive webinar
Whether you're new to DEBRA or a long-time member, this is your chance to ask questions, explore resources & make the most of your membership.
📅 Wednesday 29th October, 12:30pm: https://bit.ly/4nZn14m
Whether you're new to DEBRA or a long-time member, this is your chance to ask questions, explore resources & make the most of your membership.
📅 Wednesday 29th October, 12:30pm: https://bit.ly/4nZn14m
October 7, 2025 at 3:54 PM
🦋 Unlock the full power of your DEBRA membership in this exclusive webinar
Whether you're new to DEBRA or a long-time member, this is your chance to ask questions, explore resources & make the most of your membership.
📅 Wednesday 29th October, 12:30pm: https://bit.ly/4nZn14m
Whether you're new to DEBRA or a long-time member, this is your chance to ask questions, explore resources & make the most of your membership.
📅 Wednesday 29th October, 12:30pm: https://bit.ly/4nZn14m
DEBRA member Anna Ritchie and her daughter Jasmine will be on your screen's tomorrow! 📺
Catch them on Good Morning Britain tomorrow (Thursday 2nd October) at 8:15am,
Remember to tune in, and help us spread the word by sharing this post with your friends and family. 🦋
Catch them on Good Morning Britain tomorrow (Thursday 2nd October) at 8:15am,
Remember to tune in, and help us spread the word by sharing this post with your friends and family. 🦋
October 1, 2025 at 6:14 PM
DEBRA member Anna Ritchie and her daughter Jasmine will be on your screen's tomorrow! 📺
Catch them on Good Morning Britain tomorrow (Thursday 2nd October) at 8:15am,
Remember to tune in, and help us spread the word by sharing this post with your friends and family. 🦋
Catch them on Good Morning Britain tomorrow (Thursday 2nd October) at 8:15am,
Remember to tune in, and help us spread the word by sharing this post with your friends and family. 🦋
We’re thrilled to welcome Carly Fields as new Chair of Trustees!
Carly brings lived experience, passion & leadership to the role, having been part of the DEBRA community since 2014 when her daughter was first diagnosed with EB.
👉 Read more about Carly’s appointment & vision: https://bit.ly/48GIn23
Carly brings lived experience, passion & leadership to the role, having been part of the DEBRA community since 2014 when her daughter was first diagnosed with EB.
👉 Read more about Carly’s appointment & vision: https://bit.ly/48GIn23
October 1, 2025 at 10:20 AM
We’re thrilled to welcome Carly Fields as new Chair of Trustees!
Carly brings lived experience, passion & leadership to the role, having been part of the DEBRA community since 2014 when her daughter was first diagnosed with EB.
👉 Read more about Carly’s appointment & vision: https://bit.ly/48GIn23
Carly brings lived experience, passion & leadership to the role, having been part of the DEBRA community since 2014 when her daughter was first diagnosed with EB.
👉 Read more about Carly’s appointment & vision: https://bit.ly/48GIn23
💙 A few of our amazing DEBRA ambassadors and members were delighted to attend The 3rd Brothers Trust and Tom Holland Posh Pub Quiz last weekend - a heartfelt evening in support of DEBRA UK and other incredible causes.
Thank you so much for having us! 🦋
Thank you so much for having us! 🦋
September 27, 2025 at 3:10 PM
💙 A few of our amazing DEBRA ambassadors and members were delighted to attend The 3rd Brothers Trust and Tom Holland Posh Pub Quiz last weekend - a heartfelt evening in support of DEBRA UK and other incredible causes.
Thank you so much for having us! 🦋
Thank you so much for having us! 🦋
DEBRA UK Members, you're invited to our virtual Christmas party!
Join us for a night of festive fun at our Virtual Christmas Party, hosted by the brilliant team at AVVA 🎁✨
Let’s celebrate the season together - wherever you are! 👉 Find out more and book your place today: https://bit.ly/4nE2wKp
Join us for a night of festive fun at our Virtual Christmas Party, hosted by the brilliant team at AVVA 🎁✨
Let’s celebrate the season together - wherever you are! 👉 Find out more and book your place today: https://bit.ly/4nE2wKp
September 25, 2025 at 3:49 PM
DEBRA UK Members, you're invited to our virtual Christmas party!
Join us for a night of festive fun at our Virtual Christmas Party, hosted by the brilliant team at AVVA 🎁✨
Let’s celebrate the season together - wherever you are! 👉 Find out more and book your place today: https://bit.ly/4nE2wKp
Join us for a night of festive fun at our Virtual Christmas Party, hosted by the brilliant team at AVVA 🎁✨
Let’s celebrate the season together - wherever you are! 👉 Find out more and book your place today: https://bit.ly/4nE2wKp
Your online shopping could raise DOUBLE the normal donation thanks to our friends at @giveasyoulive.
Every penny helps to support those living, day in day out, with epidermolysis bullosa. 🩵
It's completely free to use - just click, shop and raise: https://bit.ly/46wo98J
Every penny helps to support those living, day in day out, with epidermolysis bullosa. 🩵
It's completely free to use - just click, shop and raise: https://bit.ly/46wo98J
September 25, 2025 at 7:34 AM
Your online shopping could raise DOUBLE the normal donation thanks to our friends at @giveasyoulive.
Every penny helps to support those living, day in day out, with epidermolysis bullosa. 🩵
It's completely free to use - just click, shop and raise: https://bit.ly/46wo98J
Every penny helps to support those living, day in day out, with epidermolysis bullosa. 🩵
It's completely free to use - just click, shop and raise: https://bit.ly/46wo98J
We’re proud to share that NoriZite™, a new mouth spray developed with funding from DEBRA UK and DEBRA Ireland, is now available to purchase.
It shows promising potential to relieve oral EB symptoms - helping improve everyday comfort for EB 💙
Learn more: debra.org.uk/fighting-eb-pain-mouth-spray
It shows promising potential to relieve oral EB symptoms - helping improve everyday comfort for EB 💙
Learn more: debra.org.uk/fighting-eb-pain-mouth-spray
September 21, 2025 at 2:55 PM
We’re proud to share that NoriZite™, a new mouth spray developed with funding from DEBRA UK and DEBRA Ireland, is now available to purchase.
It shows promising potential to relieve oral EB symptoms - helping improve everyday comfort for EB 💙
Learn more: debra.org.uk/fighting-eb-pain-mouth-spray
It shows promising potential to relieve oral EB symptoms - helping improve everyday comfort for EB 💙
Learn more: debra.org.uk/fighting-eb-pain-mouth-spray
🎄DEBRA Christmas cards are now available to purchase!
💌 With 15 beautiful card designs and 4 gift wrap styles, every pack you buy helps fund vital specialist healthcare, research & support for the EB community. 💙
Shop now and help us to make a difference - https://bit.ly/41JJ7zq
💌 With 15 beautiful card designs and 4 gift wrap styles, every pack you buy helps fund vital specialist healthcare, research & support for the EB community. 💙
Shop now and help us to make a difference - https://bit.ly/41JJ7zq
September 11, 2025 at 4:45 PM
🎄DEBRA Christmas cards are now available to purchase!
💌 With 15 beautiful card designs and 4 gift wrap styles, every pack you buy helps fund vital specialist healthcare, research & support for the EB community. 💙
Shop now and help us to make a difference - https://bit.ly/41JJ7zq
💌 With 15 beautiful card designs and 4 gift wrap styles, every pack you buy helps fund vital specialist healthcare, research & support for the EB community. 💙
Shop now and help us to make a difference - https://bit.ly/41JJ7zq
Ann, Paul & Mark are at the Vizion Network Kinetic’25 Expo in Telford, chatting to visitors about supporting DEBRA & joining a club that cares about cars & community. 📍 If you're at the Expo tomorrow, pop by stand G4 to say hello!
#Kinetic25 #DEBRAUK #CharityWithImpact
#Kinetic25 #DEBRAUK #CharityWithImpact
September 3, 2025 at 5:50 PM
Ann, Paul & Mark are at the Vizion Network Kinetic’25 Expo in Telford, chatting to visitors about supporting DEBRA & joining a club that cares about cars & community. 📍 If you're at the Expo tomorrow, pop by stand G4 to say hello!
#Kinetic25 #DEBRAUK #CharityWithImpact
#Kinetic25 #DEBRAUK #CharityWithImpact
A few ways you can make a difference to people living with epidermolysis bullosa (EB) this #RandomActsOfKindnessDay! 💙
Get involved 👉 bit.ly/3X3R7sO
Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.
Get involved 👉 bit.ly/3X3R7sO
Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.
February 17, 2025 at 11:34 AM
A few ways you can make a difference to people living with epidermolysis bullosa (EB) this #RandomActsOfKindnessDay! 💙
Get involved 👉 bit.ly/3X3R7sO
Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.
Get involved 👉 bit.ly/3X3R7sO
Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.
On Friday we welcomed our new MP for Bracknell, Peter Swallow (@peter4bracknell.bsky.social), to our head office.
We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA.
Read more 👉 bit.ly/41aMdMI
We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA.
Read more 👉 bit.ly/41aMdMI
February 10, 2025 at 5:39 PM
On Friday we welcomed our new MP for Bracknell, Peter Swallow (@peter4bracknell.bsky.social), to our head office.
We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA.
Read more 👉 bit.ly/41aMdMI
We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA.
Read more 👉 bit.ly/41aMdMI
EB simplex (EBS) is the most common form of EB. Approximately 70% of the EB community live with EBS.
EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals.
Read more about EB simplex: bit.ly/3C9c6mu
EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals.
Read more about EB simplex: bit.ly/3C9c6mu
January 14, 2025 at 9:14 AM
EB simplex (EBS) is the most common form of EB. Approximately 70% of the EB community live with EBS.
EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals.
Read more about EB simplex: bit.ly/3C9c6mu
EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals.
Read more about EB simplex: bit.ly/3C9c6mu
👩🔬 Meet the faces behind EB research! 💡
Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB.
👉 Read their stories here: bit.ly/3VOtUKr
Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB.
👉 Read their stories here: bit.ly/3VOtUKr
January 7, 2025 at 10:56 AM
👩🔬 Meet the faces behind EB research! 💡
Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB.
👉 Read their stories here: bit.ly/3VOtUKr
Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB.
👉 Read their stories here: bit.ly/3VOtUKr
What is EB?
EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋
Find out more: bit.ly/3OIwqxN
EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋
Find out more: bit.ly/3OIwqxN
December 6, 2024 at 4:42 PM
What is EB?
EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋
Find out more: bit.ly/3OIwqxN
EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋
Find out more: bit.ly/3OIwqxN
Whatever the social media platform, we're here for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB) also known as ‘butterfly skin’.
Leave a butterfly emoji below to say hello! 👇🦋
Leave a butterfly emoji below to say hello! 👇🦋
November 29, 2024 at 10:03 AM
Whatever the social media platform, we're here for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB) also known as ‘butterfly skin’.
Leave a butterfly emoji below to say hello! 👇🦋
Leave a butterfly emoji below to say hello! 👇🦋