Living with EB
eb-researchnetwork.org
Living with EB
It is described how epidermolysis bullosa (EB) is affecting daily Living for Butterfly Children.
Nov 12, 2019
EB Skin Disease Cure
Eddie Vedder Supports Research for Curing Rare Skin Disease
3:16
Eddie Vedder Supports Research for Curing Rare Skin Disease
RollingStoneRyan Reed
Oct 10, 2014
49 reactions · 37 shares | Rare Disease Day is Fri, Feb. 28. Join Keanu Reeves, Kristen Bell, Ed Sheeran, John Legend and others to help find a cure for Epidermolysis Bullosa (EB), a series of life-threatening rare genetic disorders affecting the skin. | EB Research Partnership | Facebook
1:01
49 reactions · 37 shares | Rare Disease Day is Fri, Feb. 28. Join Keanu Reeves, Kristen Bell, Ed Sheeran, John Legend and others to help find a cure for Epidermolysis Bullosa (EB), a series of life-threatening rare genetic disorders affecting the skin. | EB Research Partnership | Facebook
FacebookEB Research Partnership
56.3K views6 days ago
What is EB?
What is EB?
ebresearch.org
Oct 24, 2017
Top videos
Meet Elijah, another CNY child born with extremely rare skin disease called EB
0:01
Meet Elijah, another CNY child born with extremely rare skin disease called EB
cnycentral.com
Apr 2, 2017
Epidermolysis Bullosa (EB) 🦋 is a family of rare genetic disorders that affect the body's largest organ: the skin. Learn the basics of this life-threatening disease. https://www.ebresearch.org/what-is-eb.html | EB Research Partnership
0:42
Epidermolysis Bullosa (EB) 🦋 is a family of rare genetic disorders that affect the body's largest organ: the skin. Learn the basics of this life-threatening disease. https://www.ebresearch.org/what-is-eb.html | EB Research Partnership
FacebookEB Research Partnership
3.3K viewsJul 22, 2019
Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a devastating genetic condition that makes even minor friction cause wounds and scarring. The new documentary Matter of Time, premiering at Tribeca Festival, is spotlighting the urgent need for research and cures. If you or someone you know experiences unexplained skin fragility or blistering, early diagnosis can change outcomes. 📸 photo credit: Mayo Clinic & American Academy of Dermatology Book a consult: www.drannachacon.com | Ann
1:23
Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a devastating genetic condition that makes even minor friction cause wounds and scarring. The new documentary Matter of Time, premiering at Tribeca Festival, is spotlighting the urgent need for research and cures. If you or someone you know experiences unexplained skin fragility or blistering, early diagnosis can change outcomes. 📸 photo credit: Mayo Clinic & American Academy of Dermatology Book a consult: www.drannachacon.com | Ann
FacebookAnna Chacon, MD FAAD
46 views4 months ago
EB Skin Disease Stories
Crohn's Disease Stories: 4 People Share Their Journeys
Crohn's Disease Stories: 4 People Share Their Journeys
HealthlineMary Baucom
Feb 3, 2016
17-Year-Old 'Butterfly Child' with Rare Skin Disease Dies: He Was a 'Fearless Warrior,' Mom Says
1:20
17-Year-Old 'Butterfly Child' with Rare Skin Disease Dies: He Was a 'Fearless Warrior,' Mom Says
PeopleChar Adams
Apr 6, 2018
State Of Love & Trust Podcast on Instagram: "The power of EB stories is the inspiration to act. Matt Finlin and Michael articulate what makes this community so resilient and the movement to cure this disease robust. Check out our full chat with them on our YouTube channel. #SOLATpod #ebrp #documentary #doc #eddievedder"
1:31
State Of Love & Trust Podcast on Instagram: "The power of EB stories is the inspiration to act. Matt Finlin and Michael articulate what makes this community so resilient and the movement to cure this disease robust. Check out our full chat with them on our YouTube channel. #SOLATpod #ebrp #documentary #doc #eddievedder"
Instagramsolatpod
1.2K views3 weeks ago
Meet Elijah, another CNY child born with extremely rare skin disease called EB
0:01
Meet Elijah, another CNY child born with extremely rare skin disease c…
Apr 2, 2017
cnycentral.com
Epidermolysis Bullosa (EB) 🦋 is a family of rare genetic disorders that affect the body's largest organ: the skin. Learn the basics of this life-threatening disease. https://www.ebresearch.org/what-is-eb.html | EB Research Partnership
0:42
Epidermolysis Bullosa (EB) 🦋 is a family of rare genetic disorders th…
3.3K viewsJul 22, 2019
FacebookEB Research Partnership
Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a devastating genetic condition that makes even minor friction cause wounds and scarring. The new documentary Matter of Time, premiering at Tribeca Festival, is spotlighting the urgent need for research and cures. If you or someone you know experiences unexplained skin fragility or blistering, early diagnosis can change outcomes. 📸 photo credit: Mayo Clinic & American Academy of Dermatology Book a consult: www.drannachacon.com | Ann
1:23
Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a deva…
46 views4 months ago
FacebookAnna Chacon, MD FAAD
What is EB?
What is EB?
Oct 24, 2017
ebresearch.org
1.9K views · 44 reactions | Nothing prepares you for the disturbing...
3:42
1.9K views · 44 reactions | Nothing prepares you for the disturbing...
1.9K views2 weeks ago
FacebookDebra Ireland - The Butterfly Skin Charity
Epidermolysis bullosa (EB) is a genetic blistering skin disease that causes a baby's skin to blister and peel off, causing extreme pain and sometimes death. No Baby Blisters aims to create an affordable cure for forgotten, medically neglected children, by committing to finding a fast cure through the FDA. Learn more about EB with Dr. Aaron Tabor! #NoBabyBlisters #epidermolysisbullosa #fastcureplan #cureforEB #raredisease #skindisease #geneticdiseases #genetherapy #geneengineering | GenScript
0:55
Epidermolysis bullosa (EB) is a genetic blistering skin disease tha…
1K viewsSep 20, 2022
FacebookGenScript
E.B. Awareness Week highlights rare skin disorder, local family share personal experiences
2:20
E.B. Awareness Week highlights rare skin disorder, local family sha…
Oct 25, 2024
kold.com
1:18
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FacebookGenScript
4:53
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EJ had Epidermolysis Bullosa (EB) - "The Worst Disease You've Never …
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