DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.
|The mounting cost of bandages is most often not covered by an EB family's health insurance.||89.4¢ of every dollar donated goes directly to EB patients, families, and research.|
The mission of DebRA of America is to improve the quality of life for all people living with EB, their families, and caregivers through programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa. For the Wound Care Clearinghouse, email woundcare [at] debra [dot] org. For the Family Crisis Fund, email familyfund [at] debra [dot] org.
Debra’s EB Nurse Educator
An experienced Nurse Educator offers guidance to patients, caregivers and health professionals on managing Epidermolysis Bullosa (EB). The nurse manages over 3,000 inquiries annually, answers medical questions, makes referrals and directs EB patients to the resources they need. Not only is the Nurse Educator an expert in EB management but he/she also provides a caring support system for families living with EB.
Debra’s Smile Fund
In partnership with Grace Peshkur's family and friends, DebRA has created the Smile Fund. This program will grant mini wishes to EB patients who need some happiness.
Debra’s National Physician Referral Service
Debra’s National Physician Referral Service ensures that families have access to an EB specialist in their area and acts as a resource for pediatricians when additional medical care is needed.
Debra’s Patient Care Conference
The Patient Care Conference (PCC) is a biennial event that brings together the most renowned medical experts specializing in EB research and treatment. It is also an opportunity for patients, families and caregivers to obtain the latest research and medical advances in treating EB and to acquaint themselves with others affected by the disease. It also serves as a forum to ask questions to the world’s leading EB experts.
Debra’s New Family Program (NFP)
The NFP provides a comforting support system for newborns and their families as they begin to care for a child with EB. Families receive practical, hands-on information on wound care, medical supplies, medical insurance, and the range of issues related to the care of infants with EB. Debra has seen a sharp increase in services to families of newborns through peer and professional support of NFP. A trained coordinator offers one-on-one support to families by phone and through in-person educational visits. This program also provides the family with a supply of specially made clothing and basic medical products.
Collects and distributes wound care and bandage supplies to EB patients free of charge. This program is especially important to families whose insurance is unable to cover the costs of certain medical supplies. Debra collects wound care samples at the semi-annual Society of Advanced Wound Care Conferences (SAWC), and ships them to the clearing house for distribution to families. Each year, approximately $100,000.00 worth of products are sent to EB families.
To request wound care supplies, please email woundcare [at] debra [dot] org with the following information in the body of the email:
- Patient Name
- Patient Age
- List of supplies needed
- Name (for shipment)
- Phone number
**Please note that supplies are shipped every Monday, and will take 3-4 days to arrive at your home. If you require emergency supplies please contact Debra directly at 212-868-1573 ext 101**
Debra’s Family Crisis Fund
Provides emergency financial assistance to families to aid in reducing the burden of unreimbursed medical costs. Currently, the maximum grant covered is $1,200/family per year.
Click here for the application form and guidelines if you are interested in applying to the Family Crisis Fund. Submit completed form by mail or fax to:
Debra of America
Attn: Family Crisis Fund
16 East 41st Street, 3rd Floor
New York, NY 10017
Fax: (212) 868-1573
If you have any further questions, please contact the office at 212.868.1573 or email familyfund [at] debra [dot] org.
Debra Ambassador Program
Launched in 2009, the mission of the Ambassadors Program is to educate speakers all over the United States to raise EB awareness. Although still in the early stages of actualization, Debra hopes to establish a working pilot that could then be refined and replicated. Upon completion of training, Debra’s first group of dedicated volunteers will begin to visit local organizations, hospitals and birthing centers to spread greater understanding about the disease.
Debra’s Website & Newsletter
Provides current information on EB resources to patients, caregivers and health professionals. Also, shares family stories, news articles, local events happenings, ways to get involved and Debra merchandise.