Father with baby

There are approximately 200 babies born in the United States with EB each year. The New Family Advocate Program’s goal is to provide a full support system to the parents and caregivers of each and every one of these children.

Among these web pages you will find information and resources to help navigate caring for a newborn with EB, including How-To’s on wound care, bathing and 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.

Sadly, there is no cure today, but debra of America is here to help you manage the symptoms of EB as effectively as possible to best manage EB. We are always here to help.

Care packageGet a Free Care Package. All Packages Include:
 

  • A wide range of EB wound care supplies, including non-adhesive bandages and ointments
  • Instructional information and product guides from wound care leaders ConvaTec and Molnlycke
  • Educational materials and best practices on caring for the infant
  • Information on US Wound Care Distributors, including McKesson Patient Care Solutions’ Products and Resources for Care of a Newborn with EB Guide
  • Wound Care Supplies Carry Bag, Teddy Bear and more


To receive a free New Family Advocate Wound Care Package: 

If you would like to receive this free care package from debra of America, or know someone who might, you can request one via email or phone:

Email: woundcare@debra.org
Phone: 212-868-1573, ext. 104

You are not alone.

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

More Help From Home

Baby girl with EB on mother's lap. Caring for Newborns with EB

To all new parents, here are some helpful hints and detailed medical information to assist you. 

Learn More
Baby boy with EB on bed. EB Nurse Educator Program

Nurse Educators are available to provide guidance to parents, family members, and hospital staff that are caring for newborns. 

Learn More
Family with baby with EB. Know Your Rights

Learn more about potential health care coverage options and other common areas of importance when raising a child with EB. 

Learn More

Friends of the New Family Advocate ProgramSponsors

Our New Family Advocate Care Packages would not be possible without support from the EB Community and our generous corporate sponsors, leading EB wound care manufacturers ConvaTec and Molnlycke Health Care.

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