EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe is a Paris-based non-profit patient advocacy alliance representing over 1,000 rare disease patient organisations across 77 countries, driving EU rare disease policy, convening stakeholders through ECRD and Rare Disease Day, and training patient advocates via its Open Academy and Rare Barometer survey programme.
- Company typePrivate
- Founded1997
- HeadquartersParis, France
- Headcount11–50
- GTM typeB2B
- OfferingServices
What EURORDIS - Rare Diseases Europe does
EURORDIS - Rare Diseases Europe is a non-governmental, non-profit patient advocacy alliance founded in 1997 and headquartered in Paris, France. The organisation represents over 1,000 rare disease patient organisations, 55 national alliances, and 80 European federations across 77 countries, and serves as the principal patient-driven voice on rare disease policy at the EU level. Its primary constituents are rare disease patients and their families, member patient organisations, healthcare professionals and researchers (including the 24 European Reference Networks), and EU and national policymakers.
The organisation's portfolio spans advocacy, research enablement, training, and convening. Core programmes include Rare Disease Day (an international awareness day held on the last day of February), the biennial European Conference on Rare Diseases (ECRD), the annual Black Pearl Awards, the EURORDIS Open Academy for patient advocate training, Rare Barometer surveys (a patient-reported evidence programme that has surveyed 9,897 individuals), Rare Disease Week in Brussels, and patient advocacy groups (ePAGs) embedded in European Reference Networks. It also develops policy frameworks such as the forthcoming European Blueprint for Rare Diseases, and participates as a partner in multiple EU-funded projects (Join4ATMP, REMEDi4ALL, Screen4Care, Solve-RD, ERDERA, JARDIN) covering advanced therapy medicinal products, drug repurposing, AI-assisted diagnosis, genomics, and ERN integration into national health systems.
EURORDIS operates on a membership-based, non-commercial funding model with no product pricing. Revenue is sourced from member dues, donations (including from AFM-Téléthon), EU project grants, and its EURORDIS Round Table of Companies (ERTC) industry partnership forum. The organisation is governed by a Board of Directors, with current leadership including President Avril Daly, Vice-President Simona Bellagambi, and CEO Jean Saslawsky (appointed 2026). Headcount is reported at 11-50 employees, supported by more than 400 volunteers.
EURORDIS - Rare Diseases Europe firmographics
Firmographics- Name
- EURORDIS - Rare Diseases Europe
- Legal name
- EURORDIS - Rare Diseases Europe
- Website
- https://eurordis.org
- Company type
- Private
- Founded year
- 1997
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- EURORDIS - Rare Diseases Europe is a Paris-based non-profit patient advocacy alliance representing over 1,000 rare disease patient organisations across 77 countries, driving EU rare disease policy, convening stakeholders through ECRD and Rare Disease Day, and training patient advocates via its Open Academy and Rare Barometer survey programme.
- Ownership category
- akta.pro rank
EURORDIS - Rare Diseases Europe industry classification
Industry- Product category
- Patient Advocacy / Rare Disease Non-Profit Services
- NAICS
- Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990)
- SIC
- Services-Membership Organizations (8600)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)
Keywords
Where EURORDIS - Rare Diseases Europe is headquartered
LocationHeadquarters
- HQ city
- Paris
- HQ country
- France
- HQ region
- Europe
Offices1 record
Markets served
EURORDIS - Rare Diseases Europe business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Marketing channels9 records
EURORDIS - Rare Diseases Europe product offering
Product offeringCore offering
EURORDIS is a non-governmental, non-profit patient-driven alliance that unites over 1,000 rare disease patient organisations across 77 countries to advocate, train, and conduct research on behalf of people living with rare diseases in Europe. Its core offerings include policy advocacy at the EU level, the EURORDIS Open Academy for patient advocate training, the Rare Barometer survey programme, the ECRD conference, the Black Pearl Awards, Rare Disease Day awareness campaign, and patient advocacy groups (ePAGs) embedded within European Reference Networks.
Product overview
EURORDIS - Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations representing over 1,000 rare disease patient organisations across 77 countries. The organisation provides a portfolio of interconnected programmes and services including advocacy initiatives (Rare Disease Day, Rare Disease Week, Black Pearl Awards), research and data collection tools (Rare Barometer surveys, Survey Design Toolkit), training and education (EURORDIS Open Academy), convening platforms (European Conference on Rare Diseases - ECRD), patient-led digital platforms (GEMS-App for genomic research), and support services (Rare Disease Helplines, ePAG advocacy groups). These offerings work together to empower, partner, and advocate for people living with rare diseases across Europe through awareness, evidence generation, policy advocacy, and community building.
Differentiator
Problem solved
Functional benefit
Brands
- Rare Disease Day: Annual international awareness day for rare diseases, held on the last day of February
- Black Pearl Awards
- European Conference on Rare Diseases (ECRD)
- Rare Barometer
- EURORDIS Open Academy
- EURORDIS Round Table of Companies (ERTC)
Products and services
- EURORDIS Open Academy
Quantifiable outcome
- Rare Barometer survey reached 9,897 individuals, revealing mental health crisis with 7 in 10 reporting poor mental health
- +2 more outcomes
Companies that use EURORDIS - Rare Diseases Europe
Customer profileSegments4 records
Ideal customer profiles4 records
EURORDIS - Rare Diseases Europe technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration4 records
EURORDIS - Rare Diseases Europe partnerships and signals
Strategic signalPartnerships
Eleven partnerships are on record, tiered core and minor.
- Rare Diseases International (RDI)coreEURORDIS collaborates with RDI on global rare disease policy, including development of the European Blueprint for Rare Diseases and global action plan contributions.
- European Reference Networks (ERNs)coreEURORDIS works closely with the 24 European Reference Networks that connect healthcare professionals across Europe to improve care for rare disease patients.
- European Haemophilia Consortium (EHC)coreEHC is a member organization of EURORDIS and collaborates on specific initiatives such as Project Elevate Her for women's bleeding disorders.
- 101 Genomes FoundationminorEURORDIS features work from the 101 Genomes Foundation at ECRD conferences, focusing on patient-led genomic research for Marfan syndrome.
- European CommissioncoreEURORDIS collaborates with the European Commission on policy initiatives including the Biotech Act, HTA Regulation, and Joint Action JARDIN for ERN integration.
- Join4ATMPcoreEURORDIS leads patient engagement workstream in this EU-funded project focused on patient involvement in Advanced Therapy Medicinal Product (ATMP) clinical trial design.
- REMEDi4ALLcoreEURORDIS partners in this EU-funded initiative focused on drug repurposing, running a Patient Repurposing Bootcamp for patient representatives.
- ERDERA (European Rare Disease Research Coordination)coreEURORDIS collaborates with ERDERA on clinical trial coordination and Phase I/II study calls for rare diseases.
- Screen4CareminorEURORDIS participates in this EU-funded project focused on accelerating diagnosis through newborn screening and artificial intelligence.
- Solve-RDminorEURORDIS collaborates with this EU-funded project focused on solving unsolved rare diseases through data sharing and genomics.
- Joint Action JARDINcoreEURORDIS supports integration of European Reference Networks into national health systems through participation in JARDIN recommendations and implementation work.
Scale indicators7 records
Recent moves6 records
Expansion highlights5 records
EURORDIS - Rare Diseases Europe competitors and assessment
Company assessmentMarket position
Strengths2 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
EURORDIS - Rare Diseases Europe social profiles
Digital presenceEURORDIS - Rare Diseases Europe compliance and trust
Trust signalCompliance2 records
EURORDIS - Rare Diseases Europe financial estimates
Financial estimateRevenue estimate
Valuation estimate
EURORDIS - Rare Diseases Europe leadership team
Management profileNumber of profiles
Profiles3 records
EURORDIS - Rare Diseases Europe funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
EURORDIS - Rare Diseases Europe M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about EURORDIS - Rare Diseases Europe
What does EURORDIS - Rare Diseases Europe do?
EURORDIS is a non-governmental, non-profit patient-driven alliance that unites over 1,000 rare disease patient organisations across 77 countries to advocate, train, and conduct research on behalf of people living with rare diseases in Europe. Its core offerings include policy advocacy at the EU level, the EURORDIS Open Academy for patient advocate training, the Rare Barometer survey programme, the ECRD conference, the Black Pearl Awards, Rare Disease Day awareness campaign, and patient advocacy groups (ePAGs) embedded within European Reference Networks.
Is EURORDIS - Rare Diseases Europe a public or private company?
EURORDIS - Rare Diseases Europe is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was EURORDIS - Rare Diseases Europe founded?
EURORDIS - Rare Diseases Europe was founded in 1997. It employs 11 to 50 people.
Where is EURORDIS - Rare Diseases Europe based?
EURORDIS - Rare Diseases Europe is headquartered in Paris, France, in the Europe region.
Does EURORDIS - Rare Diseases Europe have an API?
No public API is recorded for EURORDIS - Rare Diseases Europe.
What industry is EURORDIS - Rare Diseases Europe in?
EURORDIS - Rare Diseases Europe's product category is Patient Advocacy / Rare Disease Non-Profit Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of HLAJAKAN, Global Health Research, Evidence & Technical Assistance Organizations. Its NAICS code is 813990 and its SIC code is 8600.