DEBRA Austria – Schmetterlingskinder

What DEBRA Austria – Schmetterlingskinder does

DEBRA Austria – Schmetterlingskinder is a non-profit patient organization (Verein) founded in 1995 in Austria to support individuals and families affected by Epidermolysis bullosa (EB), a rare genetic blistering disease. The organization's core asset is EB-Haus Austria in Salzburg — the world's first specialized clinic for EB patients, integrating an outpatient clinic, research unit, clinical trial center, and EB Academy for professional training. EB-Haus Austria achieved full ISO 9001 certification in 2019, was designated Austria's first expert centre for rare diseases in 2017, and was admitted to the European Reference Network Skin in 2018. DEBRA Austria also operates EB-Clinet, an international medical network for EB care coordination, and is a member of DEBRA International, which comprises over 50 EB self-help groups worldwide.

The organization's technology footprint is conventional non-profit infrastructure: a website with an SSL-secured online donation platform integrating Altruja GmbH and RaiseNow fundraising tools, payment processing via mPAY24, PayPal, and credit cards, plus standard analytics and social media integrations (Google Analytics, Facebook Pixel, YouTube embedding). The communications stack relies on long-tenured pro-bono creative and media partnerships — GGK MullenLowe and Mindshare have produced multi-award-winning campaigns (Cannes Lion, EFFIE, Black Pearl) for over 15 years.

DEBRA Austria's business model is donation-driven and event-amplified. Revenue streams include private and corporate donations (tax-deductible under Austrian law), a €30/year membership for EB-affected families, event-based fundraising (Biking 4 Butterfly Children at the Salzkammergut Trophy and Worldgames of Mountainbiking, with ~200 participants), and legacy/planned giving. The organization raises over €1M annually through its donation channels and supplements this with direct emergency financial assistance to families for costs not covered by Austrian health and social insurance. Go-to-market is community-led and event-driven, supported by a board-led governance structure under chairman Dr. Rainer Riedl (co-founder, 1995) and a scientific advisory board.

Name

DEBRA Austria – Schmetterlingskinder

Legal name

DEBRA Austria - Schmetterlingskinder (Hilfe bei Epidermolysis bullosa)

Website

https://debra-austria.org

Company type

Private

Founded year

1995

Operating status

Operating

Headcount range

1–10 employees

Short description

DEBRA Austria is a non-profit patient organization founded in 1995 that supports individuals and families affected by Epidermolysis bullosa (EB) by operating EB-Haus Austria, the world's first specialized EB clinic in Salzburg, and raising funds through donations, events, and memberships.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

Keywords

• Rare disease support
• Patient advocacy services
• Epidermolysis bullosa care
• Medical research funding
• Charitable healthcare services

Headquarters

HQ city

Vienna

HQ country

Austria

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure

Revenue model

1. Donations: DEBRA Austria relies primarily on donations from private individuals, corporations, and organizations. Donations can be made online, via bank transfer, or at events. All donations are tax-deductible in Austria.
2. Membership Fees: Annual membership for EB-affected families costs €30 per year, providing access to information, support services, and the international DEBRA network.
3. Event-based Fundraising: Sporting events such as the Biking 4 Butterfly Children initiative at mountain bike races generate donations through participant sponsorship and event partnerships.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels5 records

Core offering

DEBRA Austria is a non-profit patient organization that delivers specialized medical care, research funding, and direct family support for people with Epidermolysis bullosa (EB), known as "Schmetterlingskinder" (butterfly children). Its flagship asset is the EB-Haus Austria in Salzburg, the world's first dedicated EB clinic offering outpatient treatment, a research unit, a clinical trial center, and a professional training academy. The organization supplements clinical services with membership programs, emergency financial assistance for families, community exchange events, and an extensive fundraising operation (online donations, the Biking 4 Butterfly Children sports initiative, corporate partnerships, and tax-deductible giving channels).

Product overview

DEBRA Austria operates as a patient organization for individuals with Epidermolysis bullosa (EB), offering a coordinated portfolio of services rather than a single product. The core offering centers on the EB-Haus Austria, the world's first specialized clinic for butterfly children, which houses an outpatient clinic, research unit, study center, and EB Academy. Complementing this are direct support services including a membership program, emergency financial assistance, and a newsletter subscription. Fundraising is facilitated through an online donation platform and the Biking 4 Butterfly Children sports charity initiative. The organization also maintains EB-Clinet, a medical network connecting EB specialists. All services work together toward the mission of improving quality of life, ensuring competent medical care, and funding research toward a cure for EB.

Differentiator

Problem solved

Functional benefit

Brands

• EB-Haus Austria: The world's first specialized clinic for butterfly children (EB patients), including EB outpatient clinic, EB research unit, EB study center, and EB Academy.
• EB-CLINET
• Biking 4 Butterfly Children (B4BC)

Products and services

• EB-Haus Austria World's first specialized clinic for patients with Epidermolysis bullosa, combining outpatient care, a research unit, a clinical trial center, and the EB Academy for professional training. Fully funded and operated by DEBRA Austria.
• EB-Clinet

Quantifiable outcome

• Over 1 million euros raised annually through various donation channels
• +2 more outcomes

Named customers3 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration9 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• GGK MullenLowecoreGTM or Marketing PartnerGGK MullenLowe provides pro-bono creative services for DEBRA Austria's award-winning advertising campaigns featuring EB patients as 'little heroes'. The agency has created multi-award-winning TV, radio, print, and outdoor advertising since the partnership began.
• MindsharecoreGTM or Marketing PartnerMindshare media agency provides strategic media planning and placement services for DEBRA Austria's advertising campaigns, ensuring the organization's messages reach appropriate audiences across Austria. The agency has supported DEBRA Austria for 15 years.
• werbereichminorGTM or Marketing PartnerDesign agency that has graphically redesigned and refreshed DEBRA Austria's printed materials and promotional items.
• Die Abbilderei (Dieter Sajovic)minorGTM or Marketing PartnerPhotography studio that provides professional imagery for DEBRA Austria, including photos of EB-Haus Austria visits by young patients.
• EB-Haus AustriacoreStrategic or Co-development PartnerThe world's first specialized clinic for butterfly children, fully funded by DEBRA Austria. Includes EB outpatient clinic, EB research unit, EB clinical trials center, and EB academy for professional training.
• DEBRA InternationalcoreStrategic or Co-development PartnerInternational umbrella organization of EB patient groups with over 50 member organizations worldwide. DEBRA Austria is a member and active participant.
• Pro Rare AustriacoreStrategic or Co-development PartnerAlliance for rare diseases in Austria, bringing together patient organizations to advocate for rare disease patients and families.
• EB-ClinetcoreStrategic or Co-development PartnerInternational medical network for EB care and research coordination, connecting healthcare professionals and researchers working on Epidermolysis bullosa globally.
• Andreas Engelhardt (B4BC Initiator)coreOthersInitiator and organizer of the Biking 4 Butterfly Children team that participates in annual mountain bike events (Salzkammergut Trophy, Worldgames of Mountainbiking) to raise funds for DEBRA Austria. Has organized events since 2006.

Scale indicators4 records

Recent moves11 records

Expansion highlights6 records

Direct peers

• DEBRA International: Umbrella organization of national DEBRA EB patient groups (50+ members worldwide). DEBRA Austria is itself a member, making DEBRA International the closest structural peer — it coordinates international EB advocacy, research funding, and clinical best-practice sharing across the same disease.
• Pro Rare Austria: National Austrian alliance for rare disease patient organizations. DEBRA Austria is an active member; Pro Rare operates in the same policy advocacy, awareness, and patient-support space for the same Austrian rare-disease constituency.
• EB Research Partnership (EBRP): US-based nonprofit that funds EB research and is part of the broader DEBRA-affiliated network. Operates the same disease-specific patient/research funding model as DEBRA Austria, and is a frequent co-funder of EB clinical and translational research.
• DEBRA Deutschland: German sister organization also supporting EB patients, with representation on DEBRA Austria's board (Claudia Geißdörfer). Operates an analogous patient-support, research-funding, and awareness model focused on the same rare disease within a neighboring market.
• Cure EB (formerly Sohana Research Fund): UK-based EB patient organization funding research and clinical care for the same disease. Comparable mission, donor base, and research-grantmaking profile, with overlap via DEBRA International's UK DEBRA group.

Broad incumbents

• National Organization for Rare Disorders (NORD): US umbrella for rare disease organizations; comparable to EURORDIS in function. Acts as a broad incumbent in the same advocacy and policy space DEBRA Austria operates within for EB specifically.
• EURORDIS – Rare Diseases Europe: European umbrella for rare disease patient organizations and the awarding body of DEBRA Austria's 2020 Black Pearl Award. Comparable as a peer-network and advocacy body serving the same EB patient population at the policy and EU-level.

Others

• Salzburg University Hospital (SALK): Host institution where the EB-Haus Austria expert network was originally built starting in 1997. Functions as a clinical and academic infrastructure partner rather than a peer; EB-Haus Austria is operated by DEBRA Austria within this hospital ecosystem.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/watch?v=srzpfx-DMI0
• Facebookfacebook.com/schmetterlingskinder
• LinkedInlinkedin.com/company/debra-austria

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles17 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about DEBRA Austria – Schmetterlingskinder