What Einstök börn does

Einstök börn (Unique Children), legally Einstök börn stuðningsfélag, is an Icelandic non-profit support association founded on March 13, 1997 by parents of children with rare diseases who did not fit into existing support organizations. As of 2026, the organization serves nearly 900 member families representing approximately 170 different rare disease diagnoses, including several currently undiagnosed cases and some conditions with only 1-4 known cases globally. Approximately 30 newly diagnosed children join annually, and the membership has expanded roughly 8-fold since 2019.

The organization's core offerings include financial grant programs (vacation, wellness, hobby, professional, conference, and accommodation subsidies for medical travel), family counseling, rights advocacy, peer support networks, educational workshops, and community events such as the Reykjavik Marathon fundraising team and summer festivals. The technical platform is a website and e-commerce store built and managed on Veflausnir software, supporting online membership applications, merchandise sales (Dragon-themed products, clothing, bracelets, coloring books, memorial cards), and content distribution. All proceeds from merchandise and events fund the association's mission.

The revenue model relies on four streams: voluntary donations and corporate sponsorships (with tax deductibility for both individuals and companies), branded merchandise sales via the website store with nationwide Icelandic shipping, event-based fundraising (marathons, golf tournaments, athletic pledge drives), and occasional project-specific grants. The organization operates with effectively one full-time CEO/Family Counselor and a volunteer workforce, governed by a board elected at annual general meetings. Strategic partnerships include Landspítali (National University Hospital), Eurodis, TSC Alliance, Nordic Rare Disease Summit (NORDS), NPA service, and various corporate donors (Deloitte Iceland, Elko, Velferðasjóður Barna).

Name

Einstök börn

Legal name

Einstök börn, stuðningsfélag

Website

https://einstokborn.is

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

1–10 employees

Short description

Einstök börn is an Icelandic non-profit support association, founded in 1997, serving nearly 900 families of children with ultra-rare diseases (~170 diagnoses). It delivers financial grants, family counseling, advocacy, and peer community, funded via donations, merchandise, events, and grants.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Voluntary Health Organizations (813212), Civic and Social Organizations (8134)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disability Services & Independent Living Support (BPAGACAG), Special Education, Disability Support & Inclusive Education Nonprofits (BPAGADAH), Minority, Indigenous & Disability Rights (BPADAGAH)

Keywords

• Rare disease support
• Patient advocacy
• Family counseling services
• Nonprofit association
• Charity merchandise

Headquarters

HQ city

Reykjavík

HQ country

Iceland

HQ region

Europe

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Supply Chain

Revenue model

1. Donations and Sponsorships: The organization receives voluntary contributions from individuals and companies. Corporate sponsors provide regular financial support. Tax deductions are available for individual and corporate donors.
2. Merchandise Sales: Sale of branded merchandise including t-shirts, bags, candles, dragon heart ornaments, bracelets, key chains, coloring books, and memory cards. All proceeds go entirely to the association.
3. Event Fundraising: Fundraising through events including the Reykjavik Marathon, running events, golf tournaments, and other athletic fundraising activities where participants collect pledges.
4. Grants: Occasional government grants for specific projects (e.g., 40 million ISK grant for a support team at Landspítali).

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

Einstök börn is a non-profit support association (stuðningsfélag) in Iceland for children and youth with rare diseases or rare syndromes and their families. The organization provides financial grants (health, recreation, professional, conference, and accommodation subsidies), family counseling, rights advocacy, peer support, community events, and educational programs. It also operates an online store selling branded dragon-themed merchandise, with all proceeds supporting the organization's mission.

Product overview

Einstök börn is a non-profit support organization for children and youth with rare diseases or rare syndromes. The organization operates primarily as a membership-based charity with an e-commerce store selling dragon-themed merchandise (bracelets, pendants, clothing, toys, books) where all proceeds support the organization's mission. Core services include family support programs, grants for medical travel and wellness, a family center, and community events. The product portfolio consists of charity merchandise items (Drekahjarta dragon hearts, Einstakur pabbi bracelets, coloring books, clothing) and support services (grants, counseling, family center programs). The organization was founded on March 13, 1997, and serves nearly 900 families.

Differentiator

Problem solved

Functional benefit

Products and services

• Vefverslun (Online Store) E-commerce platform selling charity merchandise including dragon-themed items, clothing, accessories, and books. All proceeds support the organization's mission to support children with rare diseases.
• Fjölskyldumiðstöð (Family Center) Family center providing support, counseling, and services for families with children with rare diseases. Offers assistance with navigating healthcare systems and provides emotional support.
• Styrkir og styrktarlínur (Grants and Support Programs) Financial support programs including vacation grants, wellness grants, hobby grants, grants for professionals, conference grants, and accommodation subsidies for families traveling for medical care.
• Minningarkort (Memorial Cards) Memorial cards sent to relatives in memory of deceased loved ones. Cards feature drawings by organization members with personalized messages. Proceeds support the organization.
• Litabók 2025 (Coloring Book) A coloring book with 12 hand-drawn images featuring unique dragons, a zebra, and friends, designed to help children and families create colorful stories and celebrate diversity.
• Einstakur pabbi - silfur (Unique Dad Silver Bracelet) Beautiful steel bracelets designed by Sunday&co for Einstök börn. The bracelet features a fingerprint heart engraved on a custom-made plate with 'Einstakur pabbi' inscription. Comes in a white box marked with the organization logo.
• Drekahjarta (Dragon Heart Ornaments) Dragon heart ornaments with ribbon in gift boxes, available in various colors including pink and dark green. Part of the dragon-themed merchandise collection.
• Einstök börn Colorful T-Shirts Colorful t-shirts featuring the organization's branding, available in adult sizes (X-Small through 4XL) and children's sizes (86 through 152).

Quantifiable outcome

• Nearly 900 member families representing ~170 different rare disease diagnoses
• +3 more outcomes

Named customers1 record

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

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

• EurodiscoreStrategic or Co-development PartnerEuropean rare disease organization. Einstök börn participates in Eurodis events and presented the 'Light from Dark' photography project at the Eurodis Vienna conference in 2018. Eurodis serves as a key international network for the association.
• TSC AlliancecoreStrategic or Co-development PartnerInternational organization for Tuberous Sclerosis Complex. Icelandic families attend TSC Alliance conferences in the US. The association provides conference grants for families to attend these international events.
• NPA (Notendastýrð persónuleg þjónusta)coreStrategic or Co-development PartnerNPA - User-directed personal assistance service. The association works closely with NPA and advocates for expanded NPA agreements for families of children with rare diseases. In 2022, over 50% increase in NPA agreements was legislated.
• Nordic Rare Disease Summit (NORDS)flagshipStrategic or Co-development PartnerNordic Rare Disease Summit 2025 was organized with the association's CEO sitting on the planning committee. The summit conducted a survey on the status of individuals with rare diagnoses and won the SABRE Awards EMEA. The association contributed parents, volunteers, and professionals from Iceland to the project.
• Rare ConnectminorStrategic or Co-development PartnerOnline community platform for rare disease patients and families. Recommended on the association's website as a useful resource for families.
• Þjóðleikhúsið (National Theatre)minorGTM or Marketing PartnerThe National Theatre of Iceland hosts special performances and visits for members of Einstök börn, providing memorable cultural experiences for children with rare diseases.
• Borgarleikhúsið (City Theatre)minorGTM or Marketing PartnerThe City Theatre of Reykjavik hosts special visits and performances for member children, including meet-and-greets with actors after shows such as Ronja Ræningjadóttir and Matthildur.
• Landspítali (National University Hospital of Iceland)coreStrategic or Co-development PartnerEinstök börn works closely with Landspítali. A 40 million ISK grant was provided to Landspítali to establish a dedicated support team for children with rare diseases and seriously ill children, with the association's advocacy playing a key role.
• Norðurland (Nordic cooperation)coreStrategic or Co-development PartnerThe association maintains Nordic cooperation networks with rare disease organizations across Scandinavian countries for knowledge sharing and best practices.
• Sunday&CominorOEM/ Whitelabel/ Licensing PartnerSunday&Co designed the 'Einstakur pabbi' (Special Dad) silver bracelet for Einstök börn, featuring a fingerprint heart engraved on a custom plate with 'Einstakur pabbi' inscription.
• VeflausnircoreTechnology or IntegrationSoftware provider for the association's website and data management system. All personal data received by the association is stored in Veflausnir software systems.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella organization serving as the American counterpart; Einstök börn maintains US cooperation links and Icelandic families attend conferences organized by NORD and its member groups. Comparable mission of advocacy and support for rare disease patients.
• EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient groups; Einstök börn is a member and participates in EURORDIS events. EURORDIS operates at the continental level while Einstök börn is the Icelandic national affiliate for rare disease pediatric support.

Emerging players

• TSC Alliance: International Tuberous Sclerosis Complex organization; Einstök börn partners with TSC Alliance and provides grants for Icelandic families to attend their US conferences. Disease-specific peer in the broader rare disease support category.

Direct peers

• Umhyggja (Icelandic Association for Families of Children with Heart Defects): Icelandic support association for families of children with heart conditions; operates a similar model of family support, grants, and advocacy for a specific pediatric chronic illness cohort in Iceland.
• ÖBÍ - Organization of Disabled in Iceland: Icelandic umbrella organization for people with disabilities; Einstök börn serves a subset (children with rare diseases) while ÖBÍ serves the broader disability population. Both provide advocacy, services, and policy representation in Iceland.

Peers

• Stígamót:

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/pages/category/Nonprofit-Organization/Einst%C3%B6k-b%C3%B6rn-Stu%C3%B0ningsf%C3%A9lag-barna-me%C3%B0-sjaldg%C3%A6fa-sj%C3%BAkd%C3%B3ma-e%C3%B0a-heilkenni-211663749044260
• Instagraminstagram.com/einstok.born

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Einstök börn