Dear EB Family,

It is a great privilege to introduce myself as the Debra New Family Advocate Program (NFAP) Coordinator. As a mother who lost a child with EB and a member of Debra’s Board of Trustees, I am honored to serve in this capacity.

I know the feeling of helplessness and confusion new parents experience when their newborn is diagnosed with EB. Feeling overwhelmed and not knowing where to being is completely natural. The New Family Advocate Program was created to help parents and caregivers of newborns with EB navigate the unchartered territory that is Epidermolysis Bullosa. In addition to offering a caring support system, we provide practical, hands-on information regarding wound care, medical supplies, medical insurance, and the range of issues related to the care of babies with EB.

Along with educating families about the disease and providing supplies to lessen their baby’s pain, the program aspires to bring some hope to their lives.

Parents and caregivers, you are not alone in your struggle. Everyday has its ups and downs and sometimes a lot more downs than ups, but Debra and NFAP are here to provide the support you need to live with the emotional, physical and financial burdens of EB.

Sincerely,

Leslie Rader

To let us know about the new addition to your family or to request services please email our Nurse Educator, Geri Kelly nursegeri [at] debra [dot] org.

Caring for Newborns
To all new parents, here are some helpful hints and detailed medical information to assist you.
How to Care for Your Child

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

Pain Management
Coming Soon.
How to Ease the Pain of EB

Insurance Issues & Social Security
Important information regarding Insurance and Social Security.
Insurance and Social Security Related Resources