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EnglishHow to Support debra of America's EB Programs and Research
Updated
You can support debra of America by donating to fund EB research and its free patient programs, or by signing up for email updates through the "Get Involved" section of debra.org. The organization is a national nonprofit dedicated to improving the lives of people with Epidermolysis Bullosa (EB), and its site states that it integrates direct-to-patient programs and services, education, advocacy, partnership with treatment developers, and research funding. If you want your contribution to reach patients directly, note that debra of America reports spending an average of $1.5 million each year on direct-to-patient programs and services.
What your support funds
debra of America describes its mission as fostering meaningful change for those living with EB, a rare connective tissue disorder whose shared symptom is extremely fragile skin that blisters and tears with any friction. Its work combines patient support with research and treatment development, and the organization states that its work has led to the historic U.S. FDA approval of 3 treatments for EB in 3 years.
Ways to get involved
Donate
The site's stated purpose for donations is to help fund research for a cure while sustaining free programs and services. Because the organization is a nonprofit, donations are the mechanism it presents for underwriting that work.
Subscribe to email updates
debra.org offers email sign-up under "Get Involved," with links labeled "Subscribe to Emails" and "Sign Me Up." Subscribing keeps you informed about the organization's work and ways to participate. The site does not state a price for email subscription; treat any cost or login requirement as unconfirmed rather than assuming it is free.
Explore the "Get Involved" section
The "Get Involved" menu is the site's hub for support pathways beyond donating and subscribing. Start there to see the current options the organization lists.
What the programs and services include
Knowing where support goes can help you decide how to direct a donation. According to debra.org, the programs and services include:
| Program | What it provides |
|---|---|
| Wound Care Distribution | Bandages, dressings, ointments, and more, distributed free of charge to individuals and families with EB in the United States |
| EB Nurse Educator | Phone and email guidance for individuals with EB, family members, the professional community, and the general public |
| New Family Advocate | A full support system for parents and caregivers of a newly diagnosed child, including a free care package with wound care products, age-appropriate practical items, and educational information |
| Legal Aid | Tools and guidance for self-advocacy, such as when health insurance denies coverage or a local education system does not provide needed assistance |
| Smile Fund | Mini-wishes for people living with EB, with one winner selected from applicants each month |
| Mentorship | Mentorship support (listed among the programs and services) |
| debra Care Conference | A conference listed among the organization's programs and services |
A practical way to decide
- If your priority is research toward a cure, direct your support to donation, which the site ties to funding research.
- If your priority is immediate patient relief, note the $1.5 million average annual spend on direct-to-patient programs and services, which include free wound care supplies and family support.
- If you want to stay current before committing, subscribe to emails first and review the "Get Involved" section for the options debra of America currently lists.
For eligibility details on any specific program, check the individual program pages, since eligibility varies by program and is not fully specified on the main page.