The Burden of This Rare, Painful Condition on Familiesand Daily Life
Alternative Treatments
There are a lack of Treatment Options for Epidermolysis Bullosa Patients
Availability of Wound Equipment
Poor Wound Care Availability and Management
Cost
The Impact of 'Hidden' and Significant Costs
Diagnosis
Some of us have difficulty getting an accurate diagnosis, usually they have been without a diagnosis their whole lives
What is Epidermolysis Bullosa (EB)?
Epidermolysis bullosa is a rare condition that causes skin to become brittle and blistered.
Blisters are usually a response to minor injury, even from heat, friction, scratches, or adhesive tape. In more severe cases, blisters can occur inside the body, for example as below:
- Membrane & Esophageal Narrowing
- Corneal Abrasion
- Malnutrition and Stunting
- Risk of Infection in Wounds and Internal Organs
- Skin Cancer
- Acute Anemia
- Serverre Stress
What we do
Our Mission
Wound Equipment
We send the necessary wound equipment every month to EB sufferers right at home.
Campaign
Educate the public about E.B.
Support
Supportring E.B Families in Indonesia both physically and mentally.
Why is Epidermolysis Bullosa Rare?
No cure has been found yet
Currently researchers are developing/working on several studies to cure EB
Every EB Sufferer is different
Each sufferer has a characteristic type of EB, which makes sufferers have differences in their daily care.
BPJS or Insurance
There is no support from the government and private insurance to obtain wound equipment
Starting from February 2023
We have sent several packages of wound equipment to EB sufferers
So that sufferers can reduce their pain and can carry out activities in their daily lives.
The following is the data we have sent from February 2023 to October 2023
PLEASE MAKE A DONATION
How: Want to know more? Please use the “Chat Option” and “WhatsApp” that is displayed in the bottom right hand corner.
Account No: 1765275627
Bank Name : BNI on behalf of
Yayasan Keluarga Epidermolysis Bullosa Indonesia
Additional Information.
You might wish to know more about EB. Below are some links to other websites.
Address
Jl. Tukad Badung XXI A no. 26 Denpasar Selatan Renon 80226
Bali – Indonesia