ProRaris

What ProRaris does

ProRaris (legal name: ProRaris - Alliance Maladies Rares - Suisse) is the Swiss national umbrella alliance for patient organizations representing people with rare diseases, founded in 2010 and headquartered in Vuarrens, Vaud. The organization unites more than 70 Swiss rare-disease patient organizations and additionally supports isolated patients without organizational representation, addressing a population estimated at 500,000 to 580,000 people affected by rare diseases in Switzerland. ProRaris is the formally recognized key partner in implementing Switzerland's National Concept for Rare Diseases and holds representation on the boards of kosek (national coordination body), the Swiss Rare Diseases Registry (SRSK), and EURORDIS at the European level.

Name

ProRaris

Legal name

ProRaris - Alliance Maladies Rares - Suisse

Website

https://proraris.ch

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

ProRaris is the Swiss umbrella alliance for rare diseases, uniting over 70 patient organizations and isolated patients under one advocacy voice to influence healthcare policy, drug reimbursement, and the National Concept for Rare Diseases.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services for Rare Diseases

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212), Social Advocacy Organizations (8133)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disability Services & Independent Living Support (BPAGACAG), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Patient organization alliance
• Orphan drug reimbursement
• Health policy representation
• Patient support services

Headquarters

HQ city

Vuarrens

HQ country

Switzerland

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership Contributions: ProRaris receives annual membership fees from patient organizations (CHF 100-400/year based on size), isolated members (CHF 30/year), and sympathizing members (CHF 200-1000/year). This provides a baseline of recurring revenue.
2. Donations and Sponsoring: The organization receives donations from individuals and sponsors. In 2024, support came from pharmaceutical companies (Alexion, Biogen, Sanofi, Takeda, Pfizer, Vertex), industry associations (Interpharma, VIPS), foundations (Ernst Göhner Stiftung, Helga Victor Bodifee Foundation, JEL-Stiftung), and other donors.
3. Public Funding: ProRaris receives contributions from public authorities, including the Swiss Federal Office of Public Health (BAG/OFSP), as part of its role in implementing the National Concept for Rare Diseases.

Pricing tiers

Go-to-market motion1 record

Distribution channels2 records

Marketing channels6 records

Core offering

ProRaris is the Swiss national umbrella association that unites more than 70 patient organizations representing people with rare diseases and supports patients without organizational representation. It delivers free help-seeking and counseling services, multilingual information resources on rare diseases, advocacy for orphan drug reimbursement under Swiss compulsory health insurance, and serves as a key partner in implementing the National Concept for Rare Diseases. Funding comes from membership fees, donations, sponsorships, and public contributions.

Product overview

ProRaris is the Swiss umbrella organization (Alliance for Rare Diseases) for patient organizations representing people with rare diseases. It offers a portfolio of support and information services including help-seeking assistance for patients and families, a comprehensive rare diseases information platform covering definitions, characteristics, medications and research, advocacy for drug reimbursement through the Swiss health insurance system, membership services uniting over 70 patient organizations, and a newsletter/news service. The organization also participates in the Swiss Register for Rare Diseases (SRSK), a national registry for research purposes.

Differentiator

Problem solved

Functional benefit

Products and services

• Help Seeking Services (Hilfe suchen) Support services connecting patients with rare diseases and their families to exchange and networking opportunities, medical care, counseling for complex individual cases, and assistance with daily life, legal, and psychological questions. Targeted at patients and families affected by rare diseases in Switzerland.
• Rare Diseases Information Platform Comprehensive multilingual information resources covering rare disease definitions, characteristics, medications for rare diseases, research, and Switzerland's National Concept for Rare Diseases. Available in German, French, and Italian. Targeted at patients, families, healthcare providers, policymakers, and the public.
• Drug Reimbursement Support (Arzneimittelrückerstattung) Advocacy services helping patients navigate reimbursement for orphan drugs through Swiss compulsory health insurance (OKP) and extraordinary coverage under Articles 71a-71d KVV. Targeted at rare disease patients requiring access to high-cost or specialized medications.
• Member Services Membership program uniting more than 70 Swiss rare disease patient organizations and unrepresented patients, offering networking, advocacy representation, information resources, and participation in national and international rare disease initiatives. Targeted at Swiss rare disease patient organizations, isolated patients, and sympathizing individuals or organizations.
• Newsletter and News Updates Regular newsletter and news updates keeping members and the public informed about rare disease developments, events, policy changes, and research advances. Targeted at members, patients, healthcare stakeholders, and the broader rare disease community in Switzerland.

Quantifiable outcome

• Over 70 patient organizations representing thousands of rare disease patients unified under one advocacy voice
• +2 more outcomes

Named customers3 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

Nine partnerships are on record, tiered core, major and minor.

• Swiss Federal Office of Public Health (BAG/OFSP)coreStrategic or Co-development PartnerThe Swiss Federal Office of Public Health is a key government partner, providing public funding and collaborating on the implementation of the National Concept for Rare Diseases. ProRaris participates in working groups on reimbursement and healthcare policy.
• EURORDIScoreStrategic or Co-development PartnerProRaris is a member of EURORDIS, the European Organisation for Rare Diseases, gaining international representation and access to European rare disease networks, research collaborations, and policy advocacy at the EU level.
• Swiss Rare Diseases Registry (SRSK/RSMR)coreStrategic or Co-development PartnerProRaris is actively involved in the board and supporting committees of the Swiss Rare Diseases Registry, working to collect data on rare disease prevalence and improve care in Switzerland.
• kosek (National Coordination for Rare Diseases)coreStrategic or Co-development PartnerProRaris collaborates with kosek, the national coordination body for rare diseases in Switzerland, to implement measures and ensure patient participation in rare disease initiatives.
• Swiss PPIE NetworkmajorStrategic or Co-development PartnerProRaris board member Dr. Olivier Menzel co-founded and serves on the board of the Swiss PPIE Network (Patient and Public Involvement and Engagement), which promotes patient participation in healthcare, research, and policy.
• Swiss Federal Railways (CFF/SBB)minorStrategic or Co-development PartnerSwiss Federal Railways partnered with ProRaris and 16 other organizations for the Hidden Disabilities Sunflower Project, introducing sunflower lanyards in train stations to make invisible disabilities visible.
• Malattie Genetiche Rare (Ticino)majorStrategic or Co-development PartnerProRaris collaborates with the Malattie Genetiche Rare association in Ticino for joint events including the 2026 Rare Disease Day conference in Bellinzona.
• DEBRA (Butterfly Children)minorStrategic or Co-development PartnerProRaris works alongside DEBRA, an organization for epidermolysis bullosa (butterfly children), on advocacy issues including TARDOC tariff system impacts on complex rare disease treatments.
• University of Zurich, Geneva, OthersmajorStrategic or Co-development PartnerProRaris maintains scientific advisory committee members from Swiss universities including University of Zurich, Geneva, Basel, and Bern, providing expert guidance on medical, research, and legal aspects of rare diseases.

Scale indicators4 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• Orphanet: European reference portal and consortium for rare diseases providing disease information, classifications, and registries. Orphanet is a complementary infrastructure provider that ProRaris patients and partners rely on, and both collaborate on rare disease research.

Direct peers

• Genetic Alliance: US-based coalition of advocacy organizations addressing genetic and rare disease communities. Comparable to ProRaris as an umbrella organization working across many individual disease groups on policy, research, and access.
• NORD – National Organization for Rare Disorders: US umbrella alliance for rare disease patient organizations. NORD is the direct US analogue of ProRaris, performing the same advocacy, policy, and member-coordination functions in a different national market.
• Swiss Rare Diseases Registry (SRSK/RSMR): The Swiss national registry for rare diseases, in which ProRaris holds board and committee representation. Both organizations share the same mission of advancing rare disease research and care in Switzerland.
• Rare Diseases International: Global alliance of rare disease patient organizations. Operating at an international level, RDI shares ProRaris' advocacy, awareness, and policy-influence model for rare disease communities worldwide.
• EURORDIS – Rare Diseases Europe: European umbrella organization for rare disease patient organizations. ProRaris is a member of EURORDIS, and both serve the same fundamental role — aggregating patient organizations for collective advocacy, policy engagement, and research funding — at different geographic levels.
• kosek – National Coordination for Rare Diseases: Swiss national coordination body for rare diseases. ProRaris is a strategic partner on kosek's board, and both work on the same National Concept for Rare Diseases — kosek from the medical/system side and ProRaris from the patient side.

Emerging players

• Findacure: UK-based rare disease charity focused on bringing stakeholders together and building the rare disease community. Similar community-building and member-support mission to ProRaris, but operating in the UK with a smaller scope.

Others

• BLACKSWAN Foundation: Swiss rare disease research foundation founded in 2010 by ProRaris Vice-President Dr. Olivier Menzel. Mission-aligned organization sponsoring rare disease research (RE(ACT) congress) and connected to ProRaris through shared leadership and goals.

Regional players

• DEBRA Switzerland: Swiss patient organization for epidermolysis bullosa and a ProRaris member. Operating specifically in Switzerland for a single rare disease, DEBRA is a member of ProRaris and collaborates on joint advocacy such as TARDOC tariff issues.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights6 records

Customer concentration

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• LinkedInlinkedin.com/company/proraris

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about ProRaris