Lightnews — Scholar-powered news

Gentle hands for fragile smiles: dental care for children with EB

DEBRA UK @charitydebra.bsky.social · 5d

🦷 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

Discover how specialist dental nurse Jennifer Wood provides compassionate, tailored dental care for children with epidermolysis bullosa (EB).

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DEBRA UK @charitydebra.bsky.social · 7d

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. 🦋

EB Clinical Practice Guidelines

DEBRA UK @charitydebra.bsky.social · 7d

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

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DEBRA UK @charitydebra.bsky.social · 8d

📢 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

These Clinical Practice Guidelines (CPGs) for epidermolysis bullosa (EB) offer evidence-based guidance on how to treat someone with EB.

DEBRA UK @charitydebra.bsky.social · 11d

💙 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! 🦋

DEBRA UK @charitydebra.bsky.social · 13d

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

DEBRA UK @charitydebra.bsky.social · 13d

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

DEBRA UK @charitydebra.bsky.social · 17d

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

Research and Health webinars

DEBRA UK @charitydebra.bsky.social · 24d

🧬 Join us for our next Research & Health Webinar!

📅 Wednesday 17th September, 1pm (BST)

This month, we're joined by Dr Josefine Hirschfeld and Dr Dario Balacco who will share their latest research & insights into microbiomes in EB, followed by a Q&A.

https://bit.ly/45SbKNi

#DEBRAUK #EBResearch

Our Research and Health webinar series feature a variety guests speaking live about their expertise in EB research and healthcare.

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From blisters to bronze: Laverne’s international hockey journey

DEBRA UK @charitydebra.bsky.social · 26d

🏑 From blisters to bronze: Laverne’s hockey journey

Born with EB Simplex, Laverne has faced painful blistering since childhood.. but her love for sport never faded. Her story is one of resilience, community & the life-changing support she received from DEBRA 💙

📖 Read more: https://bit.ly/4m5yWfC

Laverne’s inspiring journey with EB Simplex shows how determination, support from DEBRA UK, and a love of sport can break barriers at any age

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DEBRA UK @charitydebra.bsky.social · 27d

🎄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

PhD: improving skin repair in JEB

DEBRA UK @charitydebra.bsky.social · Sep 7

🔬 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

Improving skin repair in JEB: How this study could advance treatments for all types of Epidermolysis Bullosa (EB).

Understanding Sexual Health for people with EB and where to access psychological support for sexual expression for people with EB.

DEBRA UK @charitydebra.bsky.social · Sep 4

🧡 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

EB and sexuality

DEBRA UK @charitydebra.bsky.social · Sep 3

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

Government publishes new 10 Year Health Plan policy paper

DEBRA UK @charitydebra.bsky.social · Jul 4

🗞️ Yesterday, the UK Government published its 10-Year Health Plan. At DEBRA UK, we’re focused on what this means for people living with EB.

Encouraging signs:

✅ Mental health support
✅ Agreed care plans
✅ Community care

🔗 Read more: www.debra.org.uk/government-p...

On July 3, the government published their new policy paper, Fit for the future, the 10 Year Health Plan for England.

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DEBRA UK @charitydebra.bsky.social · Mar 10

Lovely to see this - looking great Abel! 💙

DEBRA UK @charitydebra.bsky.social · Feb 17

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.

A graphic with 'Ways to support DEBRA' in a circle in the middle and icons for the following six options around the circle: 'Donate', 'Spread the word', 'Visit your local store', 'Join an event or challenge', 'Play the DEBRA lottery' and 'Give As You Live'.