New Family Advocate Program

debra of America’s New Family Advocate Program offers a full support system to the parents and caregivers of every infant with Epidermolysis Bullosa (EB) in the United States.

This photo is of Catt, a baby with Epidermolysis Bullosa (EB).

Among these web pages you will find information and resources to help navigate caring for your baby with EB, including bathing, how-to’s on wound care, prevention of blisters, where to find medical supplies, medical coverage rights and a host of other topics to give your baby the best care possible. 

We also have you covered through our New Family Advocate Care Package. This free care package is filled with wound care supplies and practical items to educate and provide aid to both the child who has been diagnosed with (or suspected to have) EB and his or her caregivers. Educational materials and comfort items are also included.

Request a Care Package

CALL 212-868-1573, EXT.104, EMAIL WOUNDCARE@DEBRA.ORG, OR COMPLETE THE FORM BELOW TO RECEIVE A CARE PACKAGE. 
 
This photo is of the contents of the New Family Advocate Package.

All infants who have been diagnosed with (or suspected to have) EB, or a child who is new to the U.S., are eligible to receive this free care package. 

All Care Packages Include: 

  • A wide range of EB wound care supplies, including non-adhesive bandages and ointments 
  • Instructional information and product guides  
  • Educational materials and best practices on caring for the infant 
  • Information for physicians and hospital care tips 
  • Wound care supplies carry bag, DEBRA bear and more 

Care packages are shipped directly to the primary guardians of the youth only. Restricted to those residing in the United States.  

EB Care Information

This photo is of a mother bandages her son's foot. EB Care Basics

We are here to guide you in making informed decisions surrounding proper EB care.

Learn More This photo is of a baby with EB laying down. Caring for your baby with EB

We've compiled helpful tips and detailed medical information to assist you. 

Learn More This photo is of a bandaged foot. Hospital Care Tips

These tips ensure that proper EB care protocol is followed during your visit to the hospital or doctor's office.

Learn More This photo is of a mother holding a syringe. Medical Supplies through Insurance

Check out our list of wound care distributors in the U.S. that have a specialty in serving those with EB.

Learn More This photo is of a man with EB. About EB

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States.

Learn More

Partners

Our New Family Advocate Care Packages would not be possible without support from the EB Community and our generous corporate sponsors.

Thank you for supporting the New Family Advocate Program and supplying wound care supplies! 

Chive Medela Molnlycke Skinnies Urgo

You are not alone.

Click here to read a note to parents of babies with EB from Leslie Rader, founder of the New Family Advocate Program and current member of debra of America’s Board of Directors.