Debra of America

What Debra of America does

Debra of America is a U.S. national 501(c)(3) nonprofit organization headquartered in Boulder, Colorado, founded in 1980 to serve people living with Epidermolysis Bullosa (EB), a group of rare connective-tissue disorders. The organization functions as the primary U.S. patient-advocacy and direct-support body for an estimated 25,000 Americans with EB, delivering $1.5 million annually in direct-to-patient programs such as wound-care supplies, financial assistance, and family support services. Beyond direct service, the organization coordinates advocacy, community education, and awareness infrastructure including the federally recognized EB Awareness Week, and operates as the U.S. member of DEBRA International.

Operationally, the organization's revenue model is a diversified nonprofit stack: individual donations, special events (including a gala with tiered sponsorships reaching diamond level at $25,000+), corporate sponsorships from EB-focused biotech and pharmaceutical companies (Abeona Therapeutics, Krystal Biotech, Chiesi, Molnlycke, RHEACELL), workplace giving through the Combined Federal Campaign, planned giving, and merchandise. Corporate sponsors are concentrated among firms developing or commercializing EB therapies — a structural alignment between fundraising and the commercial therapeutic pipeline.

The organization has built an advocacy track record tied to three FDA-approved EB treatments within a three-year window, positioning it as a recognized patient-voice partner in regulatory and reimbursement engagement. More recently, it has extended into computational research through an academic collaboration with Northwestern University applying artificial intelligence to squamous cell carcinoma detection in Recessive Dystrophic EB (RDEB) patients. Day-to-day operations are run by an 11-50 employee staff under the leadership of Executive Director Brett Kopelan, with governance from a board chaired by Andrew Tavani.

Name

Debra of America

Legal name

The Dystrophic Epidermolysis Bullosa Research Association of America

Website

https://debra.org

Company type

Private

Founded year

1980

Operating status

Operating

Headcount range

11–50 employees

Short description

Debra of America is a national 501(c)(3) nonprofit headquartered in Boulder, Colorado, serving approximately 25,000 U.S. residents with Epidermolysis Bullosa through direct-to-patient programs, advocacy and research partnerships, and operating as the U.S. member of DEBRA International.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease support
• Epidermolysis bullosa care
• Patient advocacy nonprofit
• Wound care distribution
• Community health programs

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Individual Donations: One-time and recurring donations from individual donors. The EB Champions monthly giving program provides sustainable recurring revenue. Donations are accepted online, by phone, and by mail.
2. Special Events Fundraising: Revenue generated from hosted events including the debra Care Conference, annual gala, golf classic, TEAM DEBRA endurance events, and supporter-led community events. These events serve both fundraising and community engagement purposes.
3. Corporate Sponsorships: Pharmaceutical, biotech, and medical supply companies sponsor debra of America events and programs. Sponsors include companies such as Abeona Therapeutics, Krystal Biotech, Chiesi Global Rare Diseases, Molnlycke, RHEACELL, BioMendics, and others at various tiers.
4. Workplace Giving Programs: Corporate matching gift programs and Combined Federal Campaign (CFC) contributions. Federal employees can designate debra of America via CFC #11990.
5. Planned Giving / Legacy Gifts: Bequests, stock transfers, and other planned giving instruments that provide long-term financial support to the organization.
6. Merchandise Sales: Sale of branded merchandise through the debra shop (BigCartel), with proceeds supporting the mission.

Pricing tiers

Go-to-market motion2 records

Distribution channels8 records

Marketing channels17 records

Core offering

debra of America is a national nonprofit organization that provides free direct-to-patient programs and services to individuals and families impacted by Epidermolysis Bullosa (EB) in the United States. Its core offerings include the Wound Care Distribution Program (free bandages, dressings, and ointments by mail), the EB Nurse Educator Program (phone/email guidance), the New Family Advocate Program (newborn support packages), Legal Aid, Smile Fund mini-wishes, a Mentorship Program, and the biennial debra Care Conference. All services are provided at no cost to patients and funded through donations, corporate sponsorships, and fundraising events.

Product overview

Debra of America is a national nonprofit organization (not a technology company) that provides direct-to-patient programs and services for individuals and families affected by Epidermolysis Bullosa. The organization operates a portfolio of support programs including the Wound Care Distribution Program (providing free wound care supplies), EB Nurse Educator Program (phone/email guidance), New Family Advocate Program (newborn support packages), Legal Aid Program, Smile Fund Program (mini-wishes), Mentorship Program, and the biennial debra Care Conference (DCC). Additional offerings include TEAM DEBRA endurance events for fundraising, EB Awareness Week advocacy campaigns, EB Cards for community education, a School Guide on EB, an EB Doctor's Guide social story for children, EB Camps resources, an EB Doctor Directory, and Travel Resources. The organization also facilitates clinical trial connections and government advocacy efforts. Debra of America does not offer a technology product, software platform, or API services.

Differentiator

Problem solved

Functional benefit

Products and services

• Wound Care Distribution Program Distributes wound care supplies free of charge to individuals and families with Epidermolysis Bullosa (EB) in the United States. Supplies include bandages, dressings, and ointments.
• EB Nurse Educator Program EB Nurse Educator available by phone and email to answer questions and provide guidance to individuals with EB, their family members, the professional community, and the general public.
• New Family Advocate Program Provides a full support system to parents and caregivers of a newly diagnosed child with EB, including a free care package with wound care products, age-appropriate practical items, and educational information.
• Legal Aid Program Provides tools and guidance to help EB patients and families advocate for themselves when issues arise, such as health insurance denials or educational system assistance.
• Smile Fund Program Fulfills mini-wishes with the goal of bringing joy to those living with EB. One Smile Fund winner is selected from a pool of applicants every month.
• Mentorship Program Offers two separate opportunities for both those living with EB and parents/caregivers to connect with mentors who understand their experiences.
• debra Care Conference (DCC) Biennial multi-day conference designed specifically for EB families and the professional community to access the best information, discover new ideas, and connect with other EB families from across the country.
• TEAM DEBRA Endurance Events Partnership program with athletes participating in endurance events (marathons, triathlons, cycling) to raise awareness and funds for EB research and patient support.
• Annual Gala (DCC Celebration) Annual fundraising gala (July 26, 2026) with dinner, silent auction, entertainment, and community awards, serving as a key donor cultivation event with corporate sponsors.
• Par for a Purpose Golf Classic Annual golf tournament at Grayhawk Golf Club, Scottsdale, AZ, with shotgun start, on-course competitions, silent auction, and 19th Hole reception.
• EB Doctor Directory Directory of physicians experienced in treating Epidermolysis Bullosa to help patients find appropriate medical care.
• EB Clinical Trials Listing Comprehensive listing of EB clinical trials including TAMES-02 (BioMendics), Natural History Study of DEB Eye Complications (Krystal Biotech), Phase 2/3 EBShield Study (TWi Biotechnology), and others, with links to trial recruitment and information.
• EB Cards Free informational business card-sized cards that explain EB and can be handed out to business owners, parents, and neighbors to increase community understanding of the condition.
• EB Camps Resource Page Resource page connecting families with EB camps including Camp Wonder, Camp Spirit Colorado, and Camp Discovery that provide safe, adapted environments for children with EB.

Quantifiable outcome

• 3 FDA-approved treatments for EB in 3 years — attributed to debra of America's work
• +4 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

AI capability2 records

Partnerships

26 partnerships are on record, tiered flagship, core and minor.

• Abeona TherapeuticsflagshipGTM or Marketing PartnerDiamond Sponsor of the DCC Celebration: The 2026 debra of America Gala. Abeona Therapeutics is a biotech company developing gene therapies for rare diseases including EB. Sponsorship supports debra's mission and connects the company with the EB patient community.
• Krystal BiotechflagshipGTM or Marketing PartnerDiamond Sponsor of the DCC Celebration: The 2026 debra of America Gala. Krystal Biotech is sponsoring the Natural History Study of DEB Eye Complications clinical trial and developing topical gene therapies for dystrophic EB. Active treatment developer partner.
• Chiesi Global Rare DiseasescoreGTM or Marketing PartnerPlatinum Sponsor of the DCC Celebration: The 2026 debra of America Gala. Chiesi is a global pharmaceutical company focused on rare diseases, providing financial support for debra's programs and events.
• MolnlyckecoreGTM or Marketing PartnerPlatinum Sponsor of the DCC Celebration: The 2026 debra of America Gala. Molnlycke is a medical products company specializing in wound care, making it a natural partner for debra's wound care distribution mission.
• RHEACELLcoreGTM or Marketing PartnerPlatinum Sponsor of the DCC Celebration: The 2026 debra of America Gala. RHEACELL develops advanced cell and gene therapies for rare diseases.
• Aegle TherapeuticsminorGTM or Marketing PartnerSilver Sponsor of the DCC Celebration: The 2026 debra of America Gala. Aegle Therapeutics is developing extracellular vesicle-based therapies for EB.
• BioMendicscoreGTM or Marketing PartnerSilver Sponsor of the DCC Celebration: The 2026 debra of America Gala. BioMendics is the sponsor of the TAMES-02 clinical trial for EB Simplex therapy (TolaSure Gel). Active clinical trial partner.
• Paradigm TherapeuticsminorGTM or Marketing PartnerSilver Sponsor of the DCC Celebration: The 2026 debra of America Gala. Paradigm Therapeutics is a biotech company developing treatments for rare diseases.
• Urgo MedicalminorGTM or Marketing PartnerSilver Sponsor of the DCC Celebration: The 2026 debra of America Gala. Urgo Medical specializes in advanced wound care products, aligning with debra's wound care distribution program.
• DEBRA InternationalflagshipStrategic or Co-development Partnerdebra of America is the U.S. member of DEBRA International, a global network of EB organizations. This partnership enables collaboration on research, advocacy, and best practices across countries.
• Research!AmericacoreStrategic or Co-development Partnerdebra of America has deepened its partnership with Research!America, a coalition working to make research a higher national priority. Collaborates on rare disease policy and advocacy initiatives.
• EveryLife Foundation for Rare DiseasescoreStrategic or Co-development Partnerdebra of America works with the EveryLife Foundation on Rare Disease Week on Capitol Hill and other rare disease legislative advocacy efforts.
• Rare Disease Legislative AdvocatescoreStrategic or Co-development Partnerdebra of America partners with Rare Disease Legislative Advocates to coordinate rare disease policy advocacy and engage with Congressional offices on EB-related legislation.
• National Institutes of Health (NIH)coreStrategic or Co-development Partnerdebra of America has developed key relationships with NIH to support EB research funding and policy initiatives.
• Northwestern University / Ann & Robert H. Lurie Children's HospitalcoreStrategic or Co-development PartnerNorthwestern University / Lurie Children's Hospital is the site of multiple EB clinical trials listed on debra.org, including the Delphi Survey on osteoporosis management, AI app for SCC detection, and cannabinoid use survey. Dr. Amy Paller is a key investigator.
• Stanford University School of MedicinecoreStrategic or Co-development PartnerStanford University School of Medicine is the site of multiple EB clinical trials, including screening for characteristics of RDEB patients and the TAMES-02 trial (BioMendics TolaSure Gel).
• University of Southern CaliforniaminorStrategic or Co-development PartnerUSC is the site of the Pilot Clinical Trial of Topical and Intravenous Gentamicin for JEB, led by Mei Chen, Ph.D. Research partnership for Junctional EB treatment.
• Children's Hospital ColoradominorStrategic or Co-development PartnerChildren's Hospital Colorado (part of the EBShield Study site and developer of EB school video resources) collaborates with debra on clinical trials and educational content for school environments.
• TWi Biotechnology, Inc.coreStrategic or Co-development PartnerTWi Biotechnology is conducting the Phase 2/3 EBShield Study evaluating AC-203 (diacerein 1% ointment) for generalized EBS. Listed as a key clinical trial partner on debra.org.
• AdaptHealth Patient Care Solutions (EB Advocate)coreChannel Partner/ Reseller/ DistributorRecommended wound care distributor with specialty in serving EB patients. Works with private insurance and State Medicaid plans to provide wound care supplies. Part of debra's medical supply company recommendations.
• CCS MedicalcoreChannel Partner/ Reseller/ DistributorRecommended wound care distributor for EB patients, with dedicated EB representative (Misty Valerius). Works with insurance carriers and Medicaid plans.
• Connect (CHC Solutions, Inc.)minorChannel Partner/ Reseller/ DistributorRecommended wound care distributor serving AL, DE, KY, MD, NJ, OH, PA, VA, WV with a dedicated EB program and Director of Special Programs.
• Direct MedicalminorChannel Partner/ Reseller/ DistributorRecommended wound care distributor serving CO, GA, IA, NE, NM, OK, OR, SD, TX with dedicated EB representatives Edward Brown and Karen Pauls.
• Camp Wonder (Children's Skin Disease Foundation)minorStrategic or Co-development Partnerdebra of America references Camp Wonder as a resource for EB families. Camp Wonder provides a free week-long camp for children ages 7-16 with skin diseases, including EB, in a safe and nurturing environment.
• Camp Spirit ColoradominorStrategic or Co-development PartnerWinter Adventure Camp for children ages 9-18 with Recessive Dystrophic EB (RDEB), held at YMCA of the Rockies/Snow Mountain Ranch, Colorado. debra of America lists this as a recommended resource for families.
• Camp Discovery (American Academy of Dermatology)minorStrategic or Co-development PartnerFree camp for children ages 8-16 with chronic skin diseases, operated by the American Academy of Dermatology. debra of America lists this as a resource for EB families.

Scale indicators5 records

Recent moves5 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases. Collaborates with debra of America on Rare Disease Week and policy work, but also operates its own patient assistance, research, and advocacy programs that overlap with debra's on EB-specific issues.
• Parent Project Muscular Dystrophy (PPMD): Disease-specific advocacy and research nonprofit for Duchenne muscular dystrophy. Operates an integrated model that mirrors debra of America: parent-led advocacy, clinical trial recruitment, conferences, newborn screening, and biotech partnerships.
• Muscular Dystrophy Association (MDA): Well-established disease-specific nonprofit combining research funding, patient services, advocacy, and corporate partnerships. Comparable programmatic architecture (patient services, advocacy, clinical trial listings, multidisciplinary care) and a similar multi-stakeholder model.
• Cystic Fibrosis Foundation: Large rare-disease nonprofit combining direct-to-patient programs, advocacy, and therapy development funding. Operates the same integrated model (research, clinical care, advocacy, corporate partnerships) that debra of America is scaling toward, with much larger scale and a mature venture-philanthropy track record.
• ALS Association: Disease-specific voluntary health organization with research funding, advocacy, care services, and corporate partnerships. Comparable revenue model (individuals, events, corporate sponsors, planned giving) and similar integration of treatment developer engagement and policy advocacy.
• Children's Tumor Foundation: Mid-sized rare-disease voluntary health organization focused on neurofibromatosis. Runs clinical trial listings, advocacy, patient support, and biotech engagement using a comparable playbook to debra of America, making it a useful operational peer for assessing scaling strategy.

Direct peers

• EB Research Partnership (EBRP): U.S.-based 501(c)(3) dedicated to funding EB research and accelerating treatments. While debra of America focuses on patient programs and advocacy and EBRP focuses on research grants, both compete for the same donor pool, biotech sponsorships, and scientific/medical legitimacy in the EB community.
• DEBRA International: Global federation of national EB organizations. Debra of America is the U.S. member. DEBRA International coordinates research funding, advocacy, and best practices across more than 50 country-level DEBRA groups; both organizations serve the same rare-disease patient population with overlapping programmatic models.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/debraofamerica
• Facebookfacebook.com/DebraofAmerica
• LinkedInlinkedin.com/company/1929181
• Instagraminstagram.com/wefighteb

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Debra of America