EURORDIS-Rare Diseases Europe logo

EURORDIS-Rare Diseases Europe Employee Directory

Non-profit OrganizationsÎle-de-France, France51-200 Employees

EURORDIS-Rare Diseases Europe is a non-profit alliance that unites more than 1,000 patient organizations from over 70 countries to improve the lives of people living with rare diseases in Europe. By connecting diverse stakeholders within and beyond the rare disease community, the organization aims to amplify the collective voice of patients and influence research priorities, policy development, and service delivery. Its work centers on ensuring timely and accurate diagnosis, access to advanced medical and social care, and broader social inclusion so that individuals with rare diseases can live independently and achieve their potential. Based in Paris, Île-de-France, the group operates as a collaboration across borders and disease areas, and its activities include developing frameworks and conducting surveys to inform ERN-related patient partnership and research efforts. In recent years, EURORDIS has announced partnerships and initiatives such as collaborative efforts with other organizations and the launch of surveys and frameworks to strengthen patient involvement in European health networks.

Find EURORDIS-Rare Diseases Europe employees' phone numbers or email addresses

EURORDIS-Rare Diseases Europe Global Highlights

Location
Employees

Europe
83

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  • France
    35
  • Spain
    12
  • United Kingdom Of Great Britain And Northern Ireland
    11
  • Italy
    9
  • Belgium
    3
  • Switzerland
    3
  • Denmark
    3
  • Romania
    2
  • Finland
    1
  • Portugal
    1
  • Netherlands
    1
  • Hungary
    1
  • Greece
    1

North America
6

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  • United States Of America
    6

EURORDIS-Rare Diseases Europe's Leadership

  • Chief Executive Officer at EURORDIS-Rare Diseases Europe
    Y. L. C.
    Chief Executive Officer
  • Chief Financial Officer at EURORDIS-Rare Diseases Europe
    P. R.
    Chief Financial Officer
  • Chief Operating Officer at EURORDIS-Rare Diseases Europe
    M. W.
    Chief Operating Officer
  • President at EURORDIS-Rare Diseases Europe
    T. A.
    President
  • Acting Chief Executive Officer at EURORDIS-Rare Diseases Europe
    V. H.
    Acting Chief Executive Officer
  • Acting Deputy Ceo & Head Of Research Policy at EURORDIS-Rare Diseases Europe
    R. F.
    Acting Deputy Ceo & Head Of Research Policy
  • Director Of European Reference Networks And Healthcare at EURORDIS-Rare Diseases Europe
    I. H.
    Director Of European Reference Networks And Healthcare
  • Social Research Director, Rare Barometer Programme Leader at EURORDIS-Rare Diseases Europe
    J. D.
    Social Research Director, Rare Barometer Programme Leader

EURORDIS-Rare Diseases Europe Employee Metrics

100%
50%
0%
2026
2025
  • Administrative
  • Business
  • Branding
  • Entrepreneurship
  • Healthcare Services
  • Other
  • Community & Social Services
  • Information Technology

Contact profiles from EURORDIS-Rare Diseases Europe

Name
Title
Contact
Location
Last Update
  • Technicienne Supérieure Systèmes Et Réseaux at EURORDIS-Rare Diseases Europe
    C. P.
    Technicienne Supérieure Systèmes Et Réseaux
    France, Île-de-France
    Sep 17, 2026
  • Eurordis Mental Health & Wellbeing - Steering Group En Working Group I & Ii Member at EURORDIS-Rare Diseases Europe
    D. K.
    Eurordis Mental Health & Wellbeing - Steering Group En Working Group I & Ii Member
    Netherlands, North Holland
    Mar 25, 2026
  • Bod at EURORDIS-Rare Diseases Europe
    D. D.
    Bod
    Romania, Sălaj
    Aug 29, 2026
  • Rare Disease Parient Advocate | New Born Screening Working Group - Genetic/Traditional Screening at EURORDIS-Rare Diseases Europe
    D. Z.
    Rare Disease Parient Advocate | New Born Screening Working Group - Genetic/Traditional Screening
    Switzerland, Zurich
    Jun 26, 2026
  • Epag-Ern Rare And Complex Epilepsy Representative at EURORDIS-Rare Diseases Europe
    I. B.
    Epag-Ern Rare And Complex Epilepsy Representative
    Italy, Veneto
    May 26, 2026
  • Mentor Regulatory & Intellectual Property at EURORDIS-Rare Diseases Europe
    M. R.
    Mentor Regulatory & Intellectual Property
    Spain, Andalusia
    Apr 16, 2026
  • Steering Committee Member at EURORDIS-Rare Diseases Europe
    N. G. M.
    Steering Committee Member
    Spain, Madrid
    Sep 10, 2026
  • Spag Member & Patient Advocate at EURORDIS-Rare Diseases Europe
    N. F.
    Spag Member & Patient Advocate
    United Kingdom, England
    Sep 14, 2026
  • Miembro at EURORDIS-Rare Diseases Europe
    P. L. O.
    Miembro
    Spain, Andalusia
    Apr 17, 2026
  • Patient Advocate, Vice-Coordinator Of The European Patient Group at EURORDIS-Rare Diseases Europe
    S. A.
    Patient Advocate, Vice-Coordinator Of The European Patient Group
    Vallée de la Jeunesse, Vaud
    Oct 19, 2025

Frequently Asked Questions

What is EURORDIS-Rare Diseases Europe known for?

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EURORDIS-Rare Diseases Europe was founded in 1997 and operates in the Non-profit Organizations industry. You can contact EURORDIS-Rare Diseases Europe's main corporate office by phone at . Explore EURORDIS-Rare Diseases Europe's company overview page for more information.

What is EURORDIS-Rare Diseases Europe's most common email format?

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EURORDIS-Rare Diseases Europe employees' email format typically follows the pattern of First.Last@eurordis.org. Trying to find reliable and up-to-date employee contact data? Find more EURORDIS-Rare Diseases Europe email formats with LeadIQ.

How many employees does EURORDIS-Rare Diseases Europe have currently?

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EURORDIS-Rare Diseases Europe has approximately 89 employees as of September 2026. These team members are located across 2 continents, including Europe and North America.

Who are EURORDIS-Rare Diseases Europe's key employees and leadership?

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As of September 2026, EURORDIS-Rare Diseases Europe's key employees include:

  • Chief Executive Officer: Y. L. C.
  • Chief Financial Officer: P. R.
  • Chief Operating Officer: M. W.
  • President: T. A.
  • Acting Chief Executive Officer: V. H.

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