@charitydebra - IGDataHub

DEBRA UK

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@charitydebra

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Bio

DEBRA is the national charity for people living with the extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB).

Links

www.justgiving.com/campaign/graeme www.debra.org.uk/get-support/become-a-debra-member/become-a-debra-member-today www.debra.org.uk/product-category/runs-challenges/?utm_source=instagram&utm_medium=organicsocial linktr.ee/DEBRAUK

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#stopthepain #debrauk #ebawareness #ebcommunity #ebaw2026 #ebawarenessweek #ebresearch #ebaw #edinburgh #scottishgovernment

Recent posts

🦋 "This week has been a powerful reminder of what we can achieve when we come together as a community." As we close EB Awareness Week 2026 , hear from DEBRA ambassador Fazeel Irfan, who lives with recessive dystrophic epidermolysis bullosa (RDEB). His message is simple: thank you. Thank you for helping raise awareness, sharing stories, supporting research, and standing alongside people living with EB. The week may be ending, but our work to #StopThePain continues. 💙 #DEBRAUK #StopThePain #EBAwareness #EBAW2026 31 Oct 2026

Tonight, two iconic Scottish Government buildings, St Andrew's House and Victoria Quay, will light up for EB Awareness Week 💜 As we come to the end of this year's awareness week, we're incredibly grateful for this visible show of support for people living with epidermolysis bullosa (EB). Moments like this remind us just how powerful awareness, advocacy and parliamentary support can be. Every conversation, campaign and meeting with decision-makers helps shine a light on EB and the urgent need to #StopThePain. If you're in or near Edinburgh this evening, why not head along and see it for yourself? Thank you to the Scottish Government for standing with the EB community. #DEBRAUK #EBAwareness #StopThePain #Edinburgh #ScottishGovernment 29 Oct 2026

It's the start of #EBAwarenessWeek! 🦋 From 25-31 October, we'll be sharing stories, facts, experiences and updates to help more people understand epidermolysis bullosa (EB), a rare and extremely painful genetic skin condition often known as butterfly skin. Swipe through to learn more about EB, the different types of the condition, and how DEBRA supports people living with EB while funding research for better treatments and care. 💙 If EB has touched your life in any way, leave a 🦋 in the comments. 📲 Repost this post and share it to your Stories. Together, we can help make sure more people hear about EB this week! #EBAwarenessWeek #ButterflySkin #EBAwareness #DEBRAUK #RareDisease #EBCommunity 25 Oct 2026

⛵💙 This half term, a group of EB siblings, family members and friends set sail on an incredible Tall Ships Youth Trust voyage, enjoying new experiences, building confidence and making lasting friendships. Living alongside EB can bring its own challenges, which is why opportunities for siblings and family members to connect, learn new skills and make memories together are so important. From climbing the mast and hoisting sails to working together as a crew, the group embraced every challenge with determination, resilience and teamwork. Well done everyone who took part and a big thank you to @tallshipsyt for helping make this experience possible. 💙⛵ #DEBRAUK #StopThePain #EBAwareness 03 Nov 2026

𝑵𝒊𝒈𝒉𝒕𝒔 𝒍𝒊𝒌𝒆 𝒕𝒉𝒆𝒔𝒆.. Another incredible night on Thursday! A huge thank you to everyone who came along, supported the event and helped us raise money and awareness for EB and the incredible work of @charitydebra . An amazing cause, a fantastic atmosphere and some brilliant fights - what a night! Thank you all for being part of it You don’t want to miss our next one… November Boxing Dinner | Thursday 26th November | Radisson Blu 𝑻𝒉𝒆 𝑯𝒐𝒎𝒆 𝒐𝒇 𝑺𝒄𝒐𝒕𝒕𝒊𝒔𝒉 𝑩𝒐𝒙𝒊𝒏𝒈 🏴󠁧󠁢󠁳󠁣󠁴󠁿 📸 : @drew.duncanson.photography 01 Nov 2026

𝑮𝑼𝑬𝑺𝑻 𝑶𝑭 𝑯𝑶𝑵𝑶𝑼𝑹… 👏 Scott joined us at the top table last night for a fantastic evening alongside our chairman, Hugh Keevins. The pair looked back on their previous fall-outs, highlights from Scott’s career, the infamous Diouf face-off, and the incredible work he’s been involved in alongside @charitydebra . The reception was superb, with our members and guests delighted to meet Scott and grab a photo with the Celtic and Scotland star! We wish @broony08 every success with his next career moves and look forward to welcoming him back to The Home of Scottish Boxing in the future 👊 30 Oct 2026

🧬 This #EBAwareness Week, we're shining a spotlight on research that could help transform how EB is treated. DEBRA UK-funded researcher Dr Jashmitha Rammanohar is working to understand why some treatments work better for some people with EB than others. As part of the ART-EB clinical trial, Jash is studying the immune system in people living with EB to help identify which treatments are most likely to be effective for different individuals. By improving our understanding of EB and exploring existing medicines that could be repurposed, this research has the potential to accelerate access to effective treatments and improve quality of life for the EB community. 💙 Read the full blog via the link in our bio. #DEBRAUK #EBResearch #EpidermolysisBullosa #RareDiseaseResearch #ClinicalResearch #EBAW 28 Oct 2026

"And for the first time in my entire life, I am seeing the possibilities of a future where there is less pain for us, less fear, less anguish." 💙 Those powerful words from DEBRA member and ambassador Lucy Beall captured exactly why we came together at the House of Lords yesterday evening (Monday 26th October). The evening brought together people from across the EB community, research, healthcare and advocacy sectors to raise awareness of epidermolysis bullosa (EB) and discuss how we can accelerate progress towards effective treatments. A huge thank you to Lord Forsyth of Drumlean, Professor Jemima Mellerio, Lucy Beall, Dr Su Lwin, Graeme Souness CBE and Claude Brown for sharing their expertise, experiences and commitment to improving the lives of people living with EB. Holding these important conversations in the House of Lords during EB Awareness Week was a powerful reminder of how far we've come and how much more we can achieve when researchers, healthcare professionals, policymakers, supporters and the EB community come together with a shared purpose. Together, we're helping to drive awareness, advance research and create hope for a future with less pain. 🦋 #DEBRAUK #StopThePain #EBAwareness #EBAW2026 27 Oct 2026

🧬 Could you help shape the future of EB research? ART-EB, one of the most ambitious EB research projects ever undertaken, is looking for a lived experience representative to join its Steering Committee. If you're 18 or over, have a direct connection to EB and feel comfortable sharing your experiences, we'd love to hear from you. Your voice and perspective could help ensure the EB community is represented throughout this important research programme. 📅 Express your interest by Thursday 29 October 2026 🔗 Visit the link in our bio to find out more and apply. #DEBRAUK #EBResearch #EBAwareness #EBCommunity #LivingWithEB #Research #PatientVoice #StopThePain 24 Oct 2026

Football, 3 Peaks, genetic testing and gastrostomy buttons… Just an average evening at the DEBRA Men's Group! Our latest session covered everything from fundraising challenges and football to healthcare and life with EB. There wasn't a set agenda, just a group of men sharing experiences, asking questions and supporting one another. Next Men's Group meeting: 📅 Tuesday 10 November, 7-8pm 💻 Online via Zoom Whether you'd like to join the conversation, listen in, or simply connect with people who understand, you're very welcome. Men's Group is open to men aged 18+ who are living with EB or affected by EB as a family member. Find out more and sign up via the link in our bio. #DEBRAUK #StopThePain #EBAwareness #EBCommunity 23 Oct 2026

📅 Save the date: DEBRA Members' Weekend returns on 22-23 May 2027 at Drayton Manor! 🦋 One of the highlights of the DEBRA calendar, Members' Weekend brings together people living with EB, their families, DEBRA colleagues and specialist EB healthcare professionals for a weekend of connection, support and shared experiences. It's a chance to learn, share practical advice, build friendships and access peer support in a welcoming and understanding community. ✨ Mark the date in your diary and keep an eye out for more information on the programme and how to get involved. Please note: this event is exclusively for DEBRA members. Not yet a member? Join DEBRA for free via the link in our bio and become part of our EB community. 💙 #DEBRAUK #EBAwareness #StopThePain #DEBRAMembersWeekend #EBCommunity 22 Oct 2026

💙 Who's ready for EB Awareness Week? 💙 We're counting down to a week of stories, awareness and community. Over the course of #EBAW, we'll be sharing real experiences from people living with EB, helping shine a light on this rare and painful condition and the incredible strength of our community. 🦋 💬 How will you be taking part in EB Awareness Week 2026? Let us know below and tag us in your content so we can cheer you on! #DEBRAUK #StopThePain #EBAwareness 21 Oct 2026

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shortcode	caption	likes	comments
DfK16PGjlSs	🦋 "This week has been a powerful reminder of wha…
DfG_KCEF1nS	Tonight, two iconic Scottish Government building…
De6bQk8l4Gi	It's the start of #EBAwarenessWeek! 🦋 From 25-3…

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up to 831 accounts

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Every post & reel

1,488 posts & reels

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Caption, likes, comments, views, duration, mentions, co-authors and sponsored status for every post and reel.

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shortcode	caption	likes	comments
DfK16PGjlSs	🦋 "This week has been a powerful reminder of wha…
DfG_KCEF1nS	Tonight, two iconic Scottish Government building…
De6bQk8l4Gi	It's the start of #EBAwarenessWeek! 🦋 From 25-3…

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Everyone who follows them

up to 12,033 followers

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Handle, full name, ID, and verified/private flags for each follower.

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username	full_name	user_id	is_verified	is_private	profile_pic_url

These are the columns. We can't show live rows: Instagram serves no follower or following list to a logged-out client, so we hold none until you order.

Everyone they follow

up to 831 accounts

$9.99

minimum

Every account this one follows, same fields.

See the columns

username	full_name	user_id	is_verified	is_private	profile_pic_url

These are the columns. We can't show live rows: Instagram serves no follower or following list to a logged-out client, so we hold none until you order.

You only pay for rows we deliver. Counts are the maximum available today; if an export comes back smaller, the difference is refunded automatically. Counts as last collected 23 hours, 52 minutes ago.