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
78

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  • France
    33
  • Spain
    12
  • United Kingdom Of Great Britain And Northern Ireland
    10
  • Italy
    8
  • Switzerland
    3
  • Denmark
    3
  • Belgium
    3
  • Finland
    1
  • Portugal
    1
  • Hungary
    1
  • Greece
    1
  • Romania
    1
  • Netherlands
    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
  • Executive Assistant To The Ceo at EURORDIS-Rare Diseases Europe
    C. F.
    Executive Assistant To The Ceo
  • Ea To The Ceo at EURORDIS-Rare Diseases Europe
    M. M.
    Ea To The Ceo
  • Director Of European Reference Networks And Healthcare at EURORDIS-Rare Diseases Europe
    I. H.
    Director Of European Reference Networks And Healthcare

EURORDIS-Rare Diseases Europe Employee Metrics

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

Contact profiles from EURORDIS-Rare Diseases Europe

Name
Title
Contact
Location
Last Update
  • Acting Deputy Ceo & Head Of Research Policy at EURORDIS-Rare Diseases Europe
    R. F.
    Acting Deputy Ceo & Head Of Research Policy
    France, Provence-Alpes-Côte d'Azur
    Apr 15, 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
  • Epag Sc, Spag Member & Mental Health Network at EURORDIS-Rare Diseases Europe
    C. F.
    Epag Sc, Spag Member & Mental Health Network
    Belgium
    Apr 13, 2026
  • Eurordis Patient Advocate ; Former Member Of Comp/Vc For Eurordis At European Medicines Agency at EURORDIS-Rare Diseases Europe
    L. G.
    Eurordis Patient Advocate ; Former Member Of Comp/Vc For Eurordis At European Medicines Agency
    United Kingdom, England
    Jun 29, 2026
  • Project Manager And Research Officer For The Rare Barometer Programme at EURORDIS-Rare Diseases Europe
    F. M. F.
    Project Manager And Research Officer For The Rare Barometer Programme
    France, Île-de-France
    Jun 01, 2025
  • Hr Support & Budget Manager at EURORDIS-Rare Diseases Europe
    S. F.
    Hr Support & Budget Manager
    France, Île-de-France
    Apr 13, 2026

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 August 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 August 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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