BLACKSWAN Foundation

Name

BLACKSWAN Foundation

Legal name

BLACKSWAN Foundation

Website

https://blackswanfoundation.ch

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Charitable Foundation for Rare Disease Research

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease research funding
• Orphan disease advocacy
• Scientific congress organization
• Research crowdfunding platform
• Charitable foundation grants

Headquarters

HQ city

Vuarrens

HQ country

Switzerland

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The foundation collects donations from individuals, corporations, and organizations worldwide. All funds raised go to preclinical and clinical research, tools for knowledge sharing among researchers, and promotion of rare disease research. The foundation operates with minimal overhead due to volunteer members and partner support.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels6 records

Core offering

BLACKSWAN Foundation is a Swiss nonprofit foundation that funds and supports research on all types of rare and orphan diseases worldwide. It does so through grant-making to academic investigators, the biennial RE(ACT) Congress, the RE(ACT) Community crowdfunding and knowledge-sharing platform, the RE(ACT) Discovery Institute for therapeutics discovery, and the #RAREvolution advocacy campaign.

Product overview

BLACKSWAN Foundation is a Swiss charitable foundation established in 2010 that supports research on rare and orphan diseases. The organization operates a portfolio of interconnected programs: RE(ACT) Congress (biennial international scientific conferences), RE(ACT) Community (crowdfunding and knowledge-sharing digital platform), and the RE(ACT) Discovery Institute (non-profit therapeutics research institute). The foundation also runs the #RAREvolution awareness campaign and provides direct research funding through its scientific committee-reviewed grant program. The foundation's unique approach supports research on all types of rare diseases rather than focusing on a single pathology.

Differentiator

Problem solved

Functional benefit

Brands

• RE(ACT) Congress: International scientific congress on rare diseases held every two years, bringing together researchers from around the world.
• RE(ACT) Community
• #RAREvolution
• FOXG1 Research

Products and services

• RE(ACT) Congress International scientific congress on rare and orphan diseases held every two years, bringing together researchers, physicians, patient organizations, and biotech, pharma, and MedTech industry representatives worldwide.
• RE(ACT) Community Online crowdfunding and knowledge-sharing platform that connects researchers, patients, and other rare disease stakeholders to facilitate crowdfunding for specific research projects and ongoing collaboration.
• RE(ACT) Discovery Institute A not-for-profit institute for therapeutics discovery in rare and orphan diseases that bridges the gap between publicly funded basic science and industry-supported applied R&D, advancing research from bench to bedside.
• #RAREvolution Campaign International advocacy campaign launched in 2015 to promote rare diseases as a research and public health priority, including an international petition with nine policy guidance points.
• Research Funding Program Grant program that collects and directs funds to preclinical and clinical research on rare and orphan diseases, supporting translational and clinical research aimed at developing curative drugs.
• FOXG1 Research Program Specialized team within the foundation supporting research on FOXG1 syndrome, raising funds and coordinating a network of researchers developing innovative therapeutic strategies.

Quantifiable outcome

• 1,800+ scientists connected, 50 collaborations established across 8 congress editions
• +2 more outcomes

Named customers7 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and minor.

• IRDiRC (International Rare Diseases Research Consortium)coreStrategic or Co-development PartnerThe foundation collaborates with IRDiRC to organize the RE(ACT) Congress. The seventh edition of RE(ACT) Congress 2023 was held jointly with the fifth IRDiRC Conference in Berlin. This partnership brings together international rare disease researchers and policy experts.
• EJP RD (European Joint Programme on Rare Diseases)coreStrategic or Co-development PartnerCo-organizer of RE(ACT) Congress with the foundation. The 2021 congress was held jointly with EJP RD as a first-time online joint event.
• Rare Diseases International (RDI)coreStrategic or Co-development PartnerSupporting organization for RE(ACT) Congress, representing rare disease patients and organizations at the international level.
• EURORDIScoreStrategic or Co-development PartnerSupporting organization for RE(ACT) Congress. EURORDIS is the European umbrella organization for rare disease patient organizations.
• King Baudouin Foundation United States (KBFUS)coreChannel Partner/ Reseller/ DistributorKBFUS handles US donations to the foundation, allowing American donors to make tax-deductible contributions through the BLACKSWAN Foundation US Fund. KBFUS is a 501(c)(3) public charity.
• Biopôle (Life Sciences Campus, Epalinges)coreOthersLocation of the RE(ACT) Discovery Institute. Biopôle is a life sciences campus near Lausanne, Switzerland.
• QoQaminorGTM or Marketing PartnerSwiss e-commerce platform that hosted a charity fundraising event for the foundation on International Rare Diseases Day 2024, raising CHF 80,000 for research scholarships.
• FOXG1 Research TeamcoreStrategic or Co-development PartnerSpecial team within the foundation supporting research on FOXG1 syndrome. Works to raise funds and establish a network of researchers for innovative therapeutic strategies. Six research projects funded totaling over USD 850,000.
• GliaPharmminorStrategic or Co-development PartnerSwiss biotechnology company specializing in astrocyte-targeted therapeutics. Supported by the foundation to uncover the role of FOXG1 in astrocytes for FOXG1 Syndrome treatment development.
• ProRaris (Allianz Seltener Krankheiten – Schweiz)coreStrategic or Co-development PartnerSwiss alliance for rare diseases representing approximately 20,000 patients. The foundation is a co-founder of ProRaris, which is affiliated with EURORDIS.
• NCCR AcceleRAREcoreStrategic or Co-development PartnerPublic-private-patient partnership to advance therapies for rare diseases. The foundation was invited to the World Economic Forum 2020 to support this project, with Federal Councillor Ignazio Cassis providing support.

Scale indicators5 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• NORD (National Organization for Rare Disorders): The US umbrella advocacy and research-support organization for rare diseases, with a similar multi-disease mandate, policy focus, and convening role to BLACKSWAN but at much larger scale. NORD's Rare Disease Day and research grants program structurally mirror BLACKSWAN's RE(ACT) Congress and grant portfolio.
• EveryLife Foundation for Rare Diseases: US-based rare disease advocacy and policy foundation that funds research and drives federal policy (e.g., the 21st Century Cures Act). Comparable to BLACKSWAN in its multi-disease scope and advocacy-driven model, though with a heavier US policy focus.
• ProRaris (Swiss Alliance for Rare Diseases): Swiss national alliance representing ~20,000 rare disease patients and co-founded by BLACKSWAN. Adjacent rather than fully overlapping—patient advocacy versus research funding—but operates in the same Swiss rare-disease ecosystem and is a formal partner.
• Rare Diseases International (RDI): Global alliance of rare disease patient organizations that supports RE(ACT) Congress. Operates at the international advocacy layer that BLACKSWAN's #RAREvolution campaign also targets, with overlapping mission and partners.
• EURORDIS (Rare Diseases Europe): European umbrella organization representing rare disease patient organizations—directly comparable to BLACKSWAN's mission and a formal partner via RE(ACT) Congress. EURORDIS operates at continental scale across 70+ countries versus BLACKSWAN's Switzerland-rooted global scope.
• Orphanet (INSERM): Global reference portal for rare diseases and orphan drugs, providing knowledge infrastructure that complements BLACKSWAN's funding and convening activities. Operates a similar worldwide scope and is a recognized standard in the rare-disease field.
• IRDiRC (International Rare Diseases Research Consortium): International consortium coordinating rare disease research worldwide, including joint RE(ACT) Congress organization. A peer in convening and policy influence, though structured as a research consortium rather than a grantmaking foundation.
• Foundation for Rare Diseases (Fondation Maladies Rares, France): French research-focused foundation supporting rare disease projects across pathologies. Provides an apples-to-apples European nonprofit comparator for grantmaking scale, partnership model, and disease-agnostic research mandate.

Broad incumbents

• Wellcome Trust: Massive global health research foundation with a much larger endowment and broader portfolio. Not a direct competitor but a structural benchmark for what a scaled-up rare-disease research philanthropy could become, including hybrid basic/applied R&D funding.

Regional players

• Rare Voices Australia: Australia's national rare disease advocacy Alliance—operates in a similar research-advocacy hybrid model but is geographically siloed to Australia. Useful peer for understanding how national rare disease policy infrastructure scales.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/BLACKSWANFound
• LinkedInlinkedin.com/company/blackswan-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Subsidiaries2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about BLACKSWAN Foundation