One Hour With EB: A Parent's Story of Medical Emergency
0:49
One Hour With EB: A Parent's Story of Medical Emergency
18.2M views3 months ago
TikTokmackenzies_eb_journey
A Parent's Love: Battling Epidermolysis Bullosa
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A Parent's Love: Battling Epidermolysis Bullosa
165.1K views5 months ago
TikTokdarcies_story
Living with Epidermolysis Bullosa: Darcie's Inspiring Journey
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Living with Epidermolysis Bullosa: Darcie's Inspiring Journey
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TikTokdarcies_story
2️⃣ Butterfly Disease Reality | A Child with EB Preparing for School Epidermolysis Bullosa
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2️⃣ Butterfly Disease Reality | A Child with EB Preparing for School Epidermolysis Bullosa
66 views4 months ago
YouTubeDebra Türkiye - Kelebek Çocuklar Derneği EB
Life with EB is complex, but we’re adapting and learning everyday.
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Life with EB is complex, but we’re adapting and learning everyday.
1.8K views1 month ago
YouTubeHope_For_Cancer_Kids
Bath time with EB. The side of EB you never see.
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Bath time with EB. The side of EB you never see.
71 views3 weeks ago
YouTubeHope_For_Cancer_Kids
"Day-to-day life with a child with EB is devastating.” – Nathan Burmeister, Chair, EB Research Partnership Australia describes the challenges facing parents of children with EB, and yet, he remains optimistic and hopeful by the clinical research being done around the world to help treat EB and find a cure. “It keeps me and my family focused on very positive things…and the future.” ​Since our founding, EB Research Partnership has funded 160 research projects laser-focused on bringing life-saving
1:04
"Day-to-day life with a child with EB is devastating.” – Nathan Burmeister, Chair, EB Research Partnership Australia describes the challenges facing parents of children with EB, and yet, he remains optimistic and hopeful by the clinical research being done around the world to help treat EB and find a cure. “It keeps me and my family focused on very positive things…and the future.” ​Since our founding, EB Research Partnership has funded 160 research projects laser-focused on bringing life-saving
146 viewsFeb 28, 2025
FacebookEB Research Partnership
1:00
Understanding Junctional Epidermolysis Bullosa Challenges
404.9K views8 months ago
TikTokdarcies_story
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
0:33
Life with EB sucks. Especially when there’s no cure😢❤️🦋
1 month ago
YouTubeHope_For_Cancer_Kids
1:06
Understanding Epidermolysis Bullosa: Darcie's Daily Care
2.8M views7 months ago
TikTokdarcies_story
1:02
Understanding Slow Days with Epidermolysis Bullosa
7.9K views4 months ago
TikTokdarcie9314
1:00
Life with EB: Darcie's Joyful Playtime Moments
13.4K views11 months ago
TikTokdarcies_story
2:44
Epidermolysis Bullosa Awareness: Remembering Elliana Rose
17K viewsApr 11, 2025
TikToksevannad
0:41
We need your help this #GivingTuesday to ensure Darcie, and other children with epidermolysis bullosa (EB), get the vital healthcare and familial support they so desperately need. "Through DEBRA’s EB Community Support Team, we met Amelia - our lifeline. She helped us access support grants for essential items like a changing table to ease the strain on our backs, sheepskin liners to protect Darcie’s delicate skin, and seam-free clothing so she could finally wear the pretty outfits she deserves, w
4.5K views7 months ago
FacebookDEBRA UK
1:01
Changing some of darcies dressings. A simple change with EB is never easy and straight forward
271 views1 month ago
YouTubeHope_For_Cancer_Kids
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Children with EB live a life of constant pain. The constant starting hurts just as much. Help us stop the staring.Text BUTTERFLY to 50300 to donate €4 to DEBRA Ireland. Donate: http://bit.ly/donatetoEB (Text costs €4. DEBRA Ireland will receive a minimum of €3.60. Service Provider: LIKECHARITY. Helpline: 076 6805278.) EB (epidermolysis bullosa) is a painful skin condition. Currently there is no cure. | Debra Ireland - The Butterfly Skin Charity
23.5K viewsOct 9, 2018
FacebookDebra Ireland - The Butterfly Skin Charity
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Darcie's Journey with Epidermolysis Bullosa
176.8K views5 months ago
TikTokdarcies_story
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Short videos

0:49
One Hour With EB: A Parent's Story of Medical Emergency
18.2M views3 months ago
TikTokmackenzies_eb_journey
1:01
A Parent's Love: Battling Epidermolysis Bullosa
165.1K views5 months ago
TikTokdarcies_story
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Living with Epidermolysis Bullosa: Darcie's Inspiring Journey
76.6K views5 months ago
TikTokdarcies_story
2:23
2️⃣ Butterfly Disease Reality | A Child with EB Preparing for School Epidermolysis Bullosa
66 views4 months ago
YouTubeDebra Türkiye - Kelebek
0:12
Life with EB is complex, but we’re adapting and learning everyday.
1.8K views1 month ago
YouTubeHope_For_Cancer_Kids
1:01
Bath time with EB. The side of EB you never see.
71 views3 weeks ago
YouTubeHope_For_Cancer_Kids
1:04
"Day-to-day life with a child with EB is devastating.” – Nathan Burmeister, Chair, EB
146 viewsFeb 28, 2025
FacebookEB Research Partnership
1:00
Understanding Junctional Epidermolysis Bullosa Challenges
404.9K views8 months ago
TikTokdarcies_story
1:14
Living with EB makes my skin as fragile as butterfly wings - but I defied all odds to have
27.9K viewsApr 16, 2025
FacebookBorn Different
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Life with EB sucks. Especially when there’s no cure😢❤️🦋
1 month ago
YouTubeHope_For_Cancer_Kids
1:06
Understanding Epidermolysis Bullosa: Darcie's Daily Care
2.8M views7 months ago
TikTokdarcies_story
1:02
Understanding Slow Days with Epidermolysis Bullosa
7.9K views4 months ago
TikTokdarcie9314
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Life with EB: Darcie's Joyful Playtime Moments
13.4K views11 months ago
TikTokdarcies_story
2:44
Epidermolysis Bullosa Awareness: Remembering Elliana Rose
17K viewsApr 11, 2025
TikToksevannad
0:41
We need your help this #GivingTuesday to ensure Darcie, and other children with
4.5K views7 months ago
FacebookDEBRA UK
1:01
Changing some of darcies dressings. A simple change with EB is never easy and
271 views1 month ago
YouTubeHope_For_Cancer_Kids
0:30
Children with EB live a life of constant pain. The constant starting hurts just as much.
23.5K viewsOct 9, 2018
FacebookDebra Ireland - The Butterfly
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Darcie's Journey with Epidermolysis Bullosa
176.8K views5 months ago
TikTokdarcies_story
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