“Living with EBS affects you mentally because when you can’t take part in something, you start to feel inadequate and wonder, ‘what’s wrong with me?’ Even though it’s my feet holding me back, it’s hard to accept when everyone else can do simple things, like walking to the shops. It’s tough because, on the outside, nothing seems wrong. My mind is willing, but my body just can’t keep up.” Tony, Sarah's Dad, also lives with EBS localised to his feet and shares how his EB affects him mentally. Your
0:45
“Living with EBS affects you mentally because when you can’t take part in something, you start to feel inadequate and wonder, ‘what’s wrong with me?’ Even though it’s my feet holding me back, it’s hard to accept when everyone else can do simple things, like walking to the shops. It’s tough because, on the outside, nothing seems wrong. My mind is willing, but my body just can’t keep up.” Tony, Sarah's Dad, also lives with EBS localised to his feet and shares how his EB affects him mentally. Your
742 viewsDec 6, 2024
FacebookDEBRA UK
Living with EB
Living with EB
Nov 12, 2019
eb-researchnetwork.org
Momentum is evertyhing. We believe we can cure EB by 2030. Those living with EB are destined to fly. Go to ebresearch.org to learn how you can join us on this journey to cure EB – and pave a path for thousands of other rare diseases. #EBAwarenessWeek #VentureIntoCures #HealEB | EB Research Partnership
3:48
Momentum is evertyhing. We believe we can cure EB by 2030. Those living with EB are destined to fly. Go to ebresearch.org to learn how you can join us on this journey to cure EB – and pave a path for thousands of other rare diseases. #EBAwarenessWeek #VentureIntoCures #HealEB | EB Research Partnership
1.2K viewsOct 27, 2023
FacebookEB Research Partnership
Across countries and communities, people living with EB share different stories but similar emotions: being stared, feeling left out, and wanting simply to belong. Mental and emotional well‑being aren’t secondary – they’re just less visible, and for this reason too often overlooked. These stories remind us that mental health support is not separate from care – it is part of what it means to truly see and support the rare disease community. | Chiesi Global Rare Diseases
1:09
Across countries and communities, people living with EB share different stories but similar emotions: being stared, feeling left out, and wanting simply to belong. Mental and emotional well‑being aren’t secondary – they’re just less visible, and for this reason too often overlooked. These stories remind us that mental health support is not separate from care – it is part of what it means to truly see and support the rare disease community. | Chiesi Global Rare Diseases
135 views3 months ago
FacebookChiesi Global Rare Diseases
Work with us
Work with us
Nov 7, 2024
debra.org.uk
Living with EB makes my skin as fragile as butterfly wings - but I defied all odds to have children ❤️ #fbreels #borndifferent #EB #epidermolysisbullosa #pregnancy #defyingtheodds | Born Different
1:14
Living with EB makes my skin as fragile as butterfly wings - but I defied all odds to have children ❤️ #fbreels #borndifferent #EB #epidermolysisbullosa #pregnancy #defyingtheodds | Born Different
27.9K viewsApr 16, 2025
FacebookBorn Different
Imagine living in a body so fragile that even the seam of your clothes can cause blisters. That’s life with Epidermolysis Bullosa (EB) — a rare genetic condition often called “the worst disease you’ve never heard of.” This week, we honour: 🦋 Those who live every day with EB’s challenges 💜 The caregivers who provide round-the-clock love and protection ✨ And the beautiful lives lost too soon EB Awareness Week is a time to amplify their voices, raise awareness, and inspire action toward better tr
0:13
Imagine living in a body so fragile that even the seam of your clothes can cause blisters. That’s life with Epidermolysis Bullosa (EB) — a rare genetic condition often called “the worst disease you’ve never heard of.” This week, we honour: 🦋 Those who live every day with EB’s challenges 💜 The caregivers who provide round-the-clock love and protection ✨ And the beautiful lives lost too soon EB Awareness Week is a time to amplify their voices, raise awareness, and inspire action toward better tr
918 views6 months ago
FacebookKoko & Shae
3:07
What's it like living with EB? Sanja in Norway (@lifewithdystrophiceb) was interviewed by @SeenStories to share her story. Sanja is a ray of light. Despite her daily battles with EB she is focused on living life to the fullest. 🦋💖 | EB Research Partnership
1.2K viewsJun 26, 2023
FacebookEB Research Partnership
Understanding EB: A Grief Journey Through Resilience
40.2K views11 months ago
TikTokcarolinegeorgiaa
EB-1 Green Card: all you need to know
Aug 5, 2021
wise.com
5:15
We need a treatment and a cure for children, like Rowan, living with the life-threatening disease EB. #HealEB http://bit.ly/2KQKVy3 | EB Research Partnership
11.4K viewsAug 15, 2019
FacebookEB Research Partnership
0:08
Living with Epidermolysis Bullosa: The Realities of Thigh Blisters and Wounds
995.3K viewsMar 8, 2023
TikTokfragileskinariana
1:41
🌟 Dreaming of living in the USA? The EB-3 Work Visa makes it possible! Why EB3 Visa? Work legally in the USA Pathway to Permanent Residency (Green Card) Bring your family with you No age limit Long study/work gap acceptable Step-by-step guidance Counselors (Phone & WhatsApp): ‪‪‪ 880 1329-722782‬‬‬‬ (Abida) ‪‪‪‪ 880 1329-722784‬‬‬‬ (Noman) ‪‪‪‪ 880 1329-722786‬‬‬‬ (Anika) ‪‪‪‪ 880 1329-722788‬‬‬‬ (Sadia) ‪‪‪‪ 880 1329-722790‬‬‬‬ (Sumona) ‪‪‪‪ 880 1329-722791‬‬‬‬ (Mitu) ‪‪‪‪ 880 1329-722796‬‬‬‬
5.4K views6 months ago
FacebookIAIC- International Admission & Immigration Co…
0:30
A Must-See Moment in Life with EB
1.6K views2 months ago
TikToklife_witheb
1:26
It began in silence, then came the courage to fly. Like monarchs starting their journey, Rowan and families living with EB move forward with fragile strength and unstoppable hope. This EB Awareness Week, we’re rallying together to raise $50,000 for research that brings us closer to treatments and a cure for EB. 100% of every dollar from this fundraiser goes directly to advancing EB research. 💙 Donate today: https://www.ebresearch.org/unstoppablemigration.html?utm_source=Facebook&utm_medium=orga
6K views7 months ago
FacebookEB Research Partnership
0:16
The most resilient little girl🩷 #epidermolysisbullosa #EBawareness #fyp #babytok #butterflybaby
12.9K views4 months ago
TikTokdarcies_story
4:36
EB's Brutal Reality: The 2026 Plan to Finally Fight Back
1 views2 months ago
YouTubeUBC News Apps & Software
7:05
Thursday, April 19th: Living with E.B.
1.6K viewsApr 20, 2018
YouTubeWMUR-TV
0:34
Project Update: Elkin Senior Living We’re excited to share continued progress on the Elkin Senior Living EB-5 project! In addition to the 11 I-526E approvals already secured for our investor families, the construction team has been hard at work pushing development forward. As of last week, the following milestones were achieved: • Ongoing storm & pipe installation • Excavation of footings for stairwells and placement of batter boards • Installation of the temporary power pole • Completion of soi
76 viewsMay 12, 2025
FacebookChristian Tyler Properties, LLC
6:21
Elliana's Journey: Hope and Healing for EB Awareness
36.2K viewsApr 9, 2025
TikTokshirvani_naran
1:02
Epidermolysis Bullosa: A Heartbreaking Journey
2.1M views4 months ago
TikTokdarcies_story
20:09
How to Get More EBT in 2026 (Do This ASAP)
121.1K viewsNov 19, 2024
YouTubeLow Income Relief
0:44
Living with All Your Ex-Boyfriends Under One Roof: A Unique Love Triangle Story
67.2K views3 months ago
YouTubeBvfyfhdryi twwtsgbvg
0:19
Dreaming of living in the U.S.? 🇺🇸 The EB-5 program can help you and your family get U.S. Green Cards through investment—plus access to top education, healthcare, and new business opportunities. #EB5Visa #USAGreenCard #InvestInUSA #ImmigrationTikTok #MoveToUSA #AmericanDream #EB5Program #GlobalInvestors #USResidency
143 views2 months ago
TikTokitrustglobal
1:29
It’s her world, we’re just living in it! 👧🏾😂 | Eb's Curly TV
21.2K views7 months ago
FacebookEb's Curly TV
4:53
Kate
71.4K viewsFeb 4, 2013
YouTubeRare Disease Day
0:11
Darcie's Inspiring Milestone: First Roll Over After EB Battle
175.1K views6 months ago
TikTokdarcies_story
5:05
Living with EB | Venture into Cures
39.6K viewsNov 19, 2020
YouTubeEB Research Partnership
11:56
The 5 Things You MUST Know about Epstein-Barr Virus (EBV)
866.3K viewsFeb 5, 2023
YouTubeDr. Eric Berg DC
3:34
Therapy can be beneficial for patients and families in the EB community. #epidermolysisbullosa #ebawareness #mentalhealth #raredisease
594 views6 months ago
TikToklifewithlizzziebee
See more
Static thumbnail place holder