New Family Advocate Program
Help for New Parents.
There are approximately 200 babies born in the United States with EB each year. The New Family Advocate Program’s goal is to provide holistic support 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.
When we learn of a newly diagnosed person with EB, we provide a free care package containing a plethora of wound care products and practical items to educate and provide aid as soon as possible after a diagnosis.
All infants who have recently been diagnosed with 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 topicals
- Instructional information and product guides from sponsors ConvaTec and Molnlycke
- Educational materials and best practices on caring for the infant
- Introduction to EB for physicians
- Wound Care Supplies Carry Bag
- Information on US Wound Care Distributors, including McKesson Patient Care Solutions’ Products and Resources for Care of a Newborn with EB Guide
- Teddy Bear and more
Would you like to receive a care package from debra of America, or know someone who might? Email woundcare [at] debra [dot] org, or contact Jeanette Gissen, Director of Programs at 212-868-1573, ext. 104 for more information.
New Family Advocate Program Friends
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!
More Help at Home.
Caring for Newborns with EB.
To all new parents, here are some helpful hints and detailed medical information to assist you.
How to Care for Your Child
Connect with our EB Nurse Educator.
Nurse Shawn Tavani is available by phone or email to provide guidance to parents, family members and hospital staff that are caring for newborns. To connect with Shawn:
Phone: 212-868-1573 or (866) DEBRA76 (866-332-7276)
Email: nurse [at] debra [dot] org
More information about our Nurse Educator Program, and common topics discussed
Frequently Asked Questions.
What is the right way to wrap my baby’s wounds? Can I breastfeed my baby? Get straightforward answers to the most commonly asked questions.
Answers to Parents' Common Questions
You are not Alone.
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.
Leslie’s goal is to help parents and caregivers feel supported, and to make them aware that they are not alone in their struggle.
Sadly, there is no cure today, but we are here to help you manage the symptoms of EB as effectively as possible. You will learn the best way to live with EB and we are always here to help.
*Please note that all medical information given by debra is for informational purposes only. Our information is not intended to substitute for the care and guidance given by a qualified physician. All regimens of care should be discussed with the patient's physician. Always check with your physician prior to starting any medications or treatment regimens.