What Is EB (Epidermolysis Bullosa)?
One of the world's most painful rare diseases — affecting the most vulnerable children.
Epidermolysis Bullosa (EB) is a genetic disease: the binding proteins between the outer (epidermis) and inner (dermis) layers of skin are missing or damaged. The result: even the slightest touch, friction, or heat causes blistering, peeling, and bleeding open wounds. EB is not just a skin disease — it affects the mouth, esophagus, and internal organs.
Why is it so dangerous?
In the most severe form (recessive dystrophic EB), babies are born facing blisters and open wounds. Infection, sepsis, malnutrition, and blood loss are constant threats. Many babies never see their first birthday. Survivors fight pain every hour of every day.
Even a parent's embrace is dangerous — a loving hug can create new blisters and bleeding wounds. This is the daily reality for EB families.
Daily life: the invisible struggle
An EB child's day is dramatically different from a healthy child's:
- !Bandage changes: 1-3 hours each, accompanied by blood, tears, and unbearable pain. Skin tears away when bandages are removed.
- !Feeding: Wounds in the mouth and esophagus make swallowing impossible. Many children depend on feeding tubes.
- !Infection: Open wounds are constant gateways for bacteria. Antibiotics are life-saving — and expensive.
- !Isolation: Social media censors the real images. Families are left alone, hopeless, and desperate.
Why an 'orphan disease'?
In the US, diseases affecting fewer than 200,000 people are 'orphan diseases.' EB falls in this category — so major pharmaceutical companies don't invest in research, government funding is insufficient, and most charities don't reach these children.
500,000 people with EB live worldwide — mostly in poor countries without free healthcare. They are medically neglected, forgotten children.
Facts you need to know
- •Affects ~500,000 people worldwide
- •70 different EB subtypes exist — the most severe are fatal
- •Damage visible on skin also occurs in the esophagus, mouth, and internal organs
- •Full-body systemic treatment does not yet exist — urgent research is needed
- •Specialized bandage costs can reach thousands of dollars per month
- •Orphan disease status means research funding is extremely limited
Understand EB in 60 seconds
Why donate to an EB child today?
Because these children have no other hope. Your donation:
- ✓Ensures urgent bandages and pain relief reach a child tonight
- ✓Prevents families from being forced to reuse dirty bandages
- ✓Funds research toward a lasting EB cure
- ✓Offers a tax-deductible, transparent, trusted 501(c)(3) channel
These children are waiting for help right now
EB doesn't stop. Bandages run out, pain relief runs out, families lose hope. When you don't donate — a child keeps suffering, a family keeps struggling. You make the difference.
No one else is helping
EB is an 'orphan disease' — major pharmaceutical companies and most charities don't reach these children. Global Glow Kids is often the only hope for medically neglected families.
Your donation creates direct impact
$25 = one week of bandages. $50 = pain relief and antibiotics. $100 = one month of nutrition support. No middlemen, no delay — funds reach families in urgent need.
Official and trusted organization
We are a US IRS-recognized 501(c)(3) organization (EIN #82-2743808). Donations are tax-deductible. We report where every dollar goes.
Monthly giving = uninterrupted hope
EB continues every day. Monthly donations guarantee a child never runs out of medicine or bandages. Even $25/month saves a life.
If you don't act today, a child will wake up in pain tonight.
Donate Now