@tonypbyrne.bsky.social
Reposted
We’re thrilled to share the incredible news - former Chair of Trustees, Jim Irvine, has been recommended to His Majesty The King for an MBE in the New Year 2026 Honours List for his outstanding services to people living with EB over the past 25 years. 💜
Read more: https://bit.ly/49oIiQA
Read more: https://bit.ly/49oIiQA
December 30, 2025 at 9:35 AM
We’re thrilled to share the incredible news - former Chair of Trustees, Jim Irvine, has been recommended to His Majesty The King for an MBE in the New Year 2026 Honours List for his outstanding services to people living with EB over the past 25 years. 💜
Read more: https://bit.ly/49oIiQA
Read more: https://bit.ly/49oIiQA
Reposted
🎂 We are wishing our Royal Patron, HRH The Duchess of Edinburgh, a very happy birthday! 💜
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
January 20, 2026 at 10:40 AM
🎂 We are wishing our Royal Patron, HRH The Duchess of Edinburgh, a very happy birthday! 💜
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
Reposted
💙 The new edition of Impact is here! Discover the families you’re helping and the difference your support makes for people living with EB.
➡️ Read now: https://bit.ly/3O9rtRr
Thank you for helping us #StopThePain of EB 🦋
➡️ Read now: https://bit.ly/3O9rtRr
Thank you for helping us #StopThePain of EB 🦋
January 29, 2026 at 5:13 PM
💙 The new edition of Impact is here! Discover the families you’re helping and the difference your support makes for people living with EB.
➡️ Read now: https://bit.ly/3O9rtRr
Thank you for helping us #StopThePain of EB 🦋
➡️ Read now: https://bit.ly/3O9rtRr
Thank you for helping us #StopThePain of EB 🦋
Reposted
💙 Exciting news! Team DEBRA Scotland is gearing up for the London Landmarks Half Marathon @londonlandmarkshalf on Sunday 12th April! 🏃♀️✨
We’re super excited that our ambassadors Emma Dodds and Scott Brown will be joining #TeamDEBRA! Please join us in cheering them on!
#TeamDEBRA #LLHM #StopThePain
We’re super excited that our ambassadors Emma Dodds and Scott Brown will be joining #TeamDEBRA! Please join us in cheering them on!
#TeamDEBRA #LLHM #StopThePain
January 31, 2026 at 4:49 PM
💙 Exciting news! Team DEBRA Scotland is gearing up for the London Landmarks Half Marathon @londonlandmarkshalf on Sunday 12th April! 🏃♀️✨
We’re super excited that our ambassadors Emma Dodds and Scott Brown will be joining #TeamDEBRA! Please join us in cheering them on!
#TeamDEBRA #LLHM #StopThePain
We’re super excited that our ambassadors Emma Dodds and Scott Brown will be joining #TeamDEBRA! Please join us in cheering them on!
#TeamDEBRA #LLHM #StopThePain
Reposted
🧬 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
Reposted
Our Q3 Update is live!
July to September has been an incredible quarter for DEBRA, filled with progress, community support, and steps forward in our mission to improve life for people living with EB. 🦋
Read the full update and see how together we’re making a difference: https://bit.ly/4nW4Igi
July to September has been an incredible quarter for DEBRA, filled with progress, community support, and steps forward in our mission to improve life for people living with EB. 🦋
Read the full update and see how together we’re making a difference: https://bit.ly/4nW4Igi
DEBRA Quarterly Update 2025 Q3
Stay informed with the DEBRA Quarterly Update 2025 Q3, featuring the latest insights and developments you need to know.
www.debra.org.uk
November 13, 2025 at 5:14 PM
Our Q3 Update is live!
July to September has been an incredible quarter for DEBRA, filled with progress, community support, and steps forward in our mission to improve life for people living with EB. 🦋
Read the full update and see how together we’re making a difference: https://bit.ly/4nW4Igi
July to September has been an incredible quarter for DEBRA, filled with progress, community support, and steps forward in our mission to improve life for people living with EB. 🦋
Read the full update and see how together we’re making a difference: https://bit.ly/4nW4Igi
Reposted
📍 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
Reposted
🔬 Research highlight: Screening drugs to target RDEB cancer 🔬
Over 3,000 approved drugs will be screened to identify which kill skin cancer cells & could be repurposed to treat the aggressive form of skin cancer which frequently affects people with RDEB.
Read more now! 👇https://bit.ly/4nmzw9R
Over 3,000 approved drugs will be screened to identify which kill skin cancer cells & could be repurposed to treat the aggressive form of skin cancer which frequently affects people with RDEB.
Read more now! 👇https://bit.ly/4nmzw9R
Screening drugs to target RDEB cancer
Identifying effective treatments for skin cancer in patients with RDEB. Learn about the promising findings that could lead to rapid clinical trials for safer, repurposed therapies.
www.debra.org.uk
October 5, 2025 at 2:50 PM
🔬 Research highlight: Screening drugs to target RDEB cancer 🔬
Over 3,000 approved drugs will be screened to identify which kill skin cancer cells & could be repurposed to treat the aggressive form of skin cancer which frequently affects people with RDEB.
Read more now! 👇https://bit.ly/4nmzw9R
Over 3,000 approved drugs will be screened to identify which kill skin cancer cells & could be repurposed to treat the aggressive form of skin cancer which frequently affects people with RDEB.
Read more now! 👇https://bit.ly/4nmzw9R
Reposted
🦋 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
Reposted
🛍️ 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
Reposted
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
Reposted
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
Reposted
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
Reposted
🧵 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
Reposted
🔬 Research blog: Could a psoriasis drug ease symptoms of EBS?🔬
With support from DEBRA UK, Christine's team is working to repurpose apremilast (an approved psoriasis drug) bringing hope for a faster, accessible treatment for those living with EBS. Read more now 👇
https://bit.ly/4gglYdW
With support from DEBRA UK, Christine's team is working to repurpose apremilast (an approved psoriasis drug) bringing hope for a faster, accessible treatment for those living with EBS. Read more now 👇
https://bit.ly/4gglYdW
Clinical trial to repurpose an approved psoriasis drug for EBS
Dr Rob Hynds shares her research
www.debra.org.uk
October 12, 2025 at 2:50 PM
🔬 Research blog: Could a psoriasis drug ease symptoms of EBS?🔬
With support from DEBRA UK, Christine's team is working to repurpose apremilast (an approved psoriasis drug) bringing hope for a faster, accessible treatment for those living with EBS. Read more now 👇
https://bit.ly/4gglYdW
With support from DEBRA UK, Christine's team is working to repurpose apremilast (an approved psoriasis drug) bringing hope for a faster, accessible treatment for those living with EBS. Read more now 👇
https://bit.ly/4gglYdW
Reposted
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
Reposted
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
Reposted
💙 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! 🦋
Reposted
📢 EB Clinical Practice Guidelines - now updated!
Did you know we have a dedicated page for EB Clinical Practice Guidelines (CPGs) - covering everything from wound care to psychosocial care?
🔍 Explore all professional and patient guidelines now: https://bit.ly/3K1hLhY
Did you know we have a dedicated page for EB Clinical Practice Guidelines (CPGs) - covering everything from wound care to psychosocial care?
🔍 Explore all professional and patient guidelines now: https://bit.ly/3K1hLhY
EB Clinical Practice Guidelines
These Clinical Practice Guidelines (CPGs) for epidermolysis bullosa (EB) offer evidence-based guidance on how to treat someone with EB.
www.debra.org.uk
September 30, 2025 at 3:54 PM
📢 EB Clinical Practice Guidelines - now updated!
Did you know we have a dedicated page for EB Clinical Practice Guidelines (CPGs) - covering everything from wound care to psychosocial care?
🔍 Explore all professional and patient guidelines now: https://bit.ly/3K1hLhY
Did you know we have a dedicated page for EB Clinical Practice Guidelines (CPGs) - covering everything from wound care to psychosocial care?
🔍 Explore all professional and patient guidelines now: https://bit.ly/3K1hLhY
Reposted
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
Reposted
🦷 Gentle hands for fragile smiles
Dental care can be especially challenging for children living with EB. This blog, penned by GOSH nurse Jennifer, explores the importance of compassionate, informed care & how small changes can make a big difference.
👉 Read the full story: https://bit.ly/46xHdEO
Dental care can be especially challenging for children living with EB. This blog, penned by GOSH nurse Jennifer, explores the importance of compassionate, informed care & how small changes can make a big difference.
👉 Read the full story: https://bit.ly/46xHdEO
Gentle hands for fragile smiles: dental care for children with EB
Discover how specialist dental nurse Jennifer Wood provides compassionate, tailored dental care for children with epidermolysis bullosa (EB).
www.debra.org.uk
October 3, 2025 at 3:55 PM
🦷 Gentle hands for fragile smiles
Dental care can be especially challenging for children living with EB. This blog, penned by GOSH nurse Jennifer, explores the importance of compassionate, informed care & how small changes can make a big difference.
👉 Read the full story: https://bit.ly/46xHdEO
Dental care can be especially challenging for children living with EB. This blog, penned by GOSH nurse Jennifer, explores the importance of compassionate, informed care & how small changes can make a big difference.
👉 Read the full story: https://bit.ly/46xHdEO
Reposted
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
Reposted
🧡 It’s World Sexual Health Day!
For people living with EB, navigating intimacy and relationships can be complex. That’s why we have a dedicated resource to support open, respectful conversations around sexuality & wellbeing.
💬 https://bit.ly/3JNboid
#WorldSexualHealthDay #DEBRAUK #EBCommunity
For people living with EB, navigating intimacy and relationships can be complex. That’s why we have a dedicated resource to support open, respectful conversations around sexuality & wellbeing.
💬 https://bit.ly/3JNboid
#WorldSexualHealthDay #DEBRAUK #EBCommunity
EB and sexuality
Understanding Sexual Health for people with EB and where to access psychological support for sexual expression for people with EB.
www.debra.org.uk
September 4, 2025 at 3:53 PM
🧡 It’s World Sexual Health Day!
For people living with EB, navigating intimacy and relationships can be complex. That’s why we have a dedicated resource to support open, respectful conversations around sexuality & wellbeing.
💬 https://bit.ly/3JNboid
#WorldSexualHealthDay #DEBRAUK #EBCommunity
For people living with EB, navigating intimacy and relationships can be complex. That’s why we have a dedicated resource to support open, respectful conversations around sexuality & wellbeing.
💬 https://bit.ly/3JNboid
#WorldSexualHealthDay #DEBRAUK #EBCommunity
Reposted
🔬 Research highlight: PhD - improving skin repair in JEB 🔬
Dr Rognoni's four-year project will train a new scientist specialising in EB research as they achieve their PhD by studying ways to reduce EB symptoms at a cellular level.
Read more about the project! 👇
https://bit.ly/4fpoga3
Dr Rognoni's four-year project will train a new scientist specialising in EB research as they achieve their PhD by studying ways to reduce EB symptoms at a cellular level.
Read more about the project! 👇
https://bit.ly/4fpoga3
PhD: improving skin repair in JEB
Improving skin repair in JEB: How this study could advance treatments for all types of Epidermolysis Bullosa (EB).
www.debra.org.uk
September 7, 2025 at 2:53 PM
🔬 Research highlight: PhD - improving skin repair in JEB 🔬
Dr Rognoni's four-year project will train a new scientist specialising in EB research as they achieve their PhD by studying ways to reduce EB symptoms at a cellular level.
Read more about the project! 👇
https://bit.ly/4fpoga3
Dr Rognoni's four-year project will train a new scientist specialising in EB research as they achieve their PhD by studying ways to reduce EB symptoms at a cellular level.
Read more about the project! 👇
https://bit.ly/4fpoga3
Reposted
This #InternationalDayOfWomenAndGirlsInScience, meet our researcher Dr Giovana Carrasco, a research fellow working at The University of Edinburgh 🔬
Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB.
Read more about Giovana's research 👇
Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB.
Read more about Giovana's research 👇
Skin cancer in Kindler EB
Dr Giovana Carrasco, shares her research to investigate skin cancer in Kindler EB.
bit.ly
February 11, 2025 at 5:09 PM
This #InternationalDayOfWomenAndGirlsInScience, meet our researcher Dr Giovana Carrasco, a research fellow working at The University of Edinburgh 🔬
Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB.
Read more about Giovana's research 👇
Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB.
Read more about Giovana's research 👇