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
  • Patient Engagement Manager - Atmps & Clinical Research at EURORDIS-Rare Diseases Europe
    R. F.
    Patient Engagement Manager - Atmps & Clinical Research
    Spain, Catalonia
    Jun 30, 2026
  • Patient Engagement Senior Manager Community Advisory Boards at EURORDIS-Rare Diseases Europe
    R. C.
    Patient Engagement Senior Manager Community Advisory Boards
    Spain, Catalonia
    Aug 29, 2026
  • Digital Patient Engagement Manager at EURORDIS-Rare Diseases Europe
    V. P.
    Digital Patient Engagement Manager
    Romania
    Sep 10, 2026
  • Corporate Relations Manager at EURORDIS-Rare Diseases Europe
    A. E. O.
    Corporate Relations Manager
    France, Île-de-France
    Nov 14, 2025
  • 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
  • Human Resources Support & Budget Manager at EURORDIS-Rare Diseases Europe
    S. F.
    Human Resources Support & Budget Manager
    France, Île-de-France
    Sep 18, 2026
  • Corporate And Donor Relations Manager at EURORDIS-Rare Diseases Europe
    J. M.
    Corporate And Donor Relations Manager
    France, Île-de-France
    Sep 01, 2026
  • Eu Public Affairs Senior Manager at EURORDIS-Rare Diseases Europe
    J. P.
    Eu Public Affairs Senior Manager
    Belgium, Brussels Region
    Dec 09, 2024
  • Digital & Data Advisor at EURORDIS-Rare Diseases Europe
    A. B.
    Digital & Data Advisor
    Italy
    Jun 29, 2026
  • Member Of Eurordis Hta Task Force at EURORDIS-Rare Diseases Europe
    A. A.
    Member Of Eurordis Hta Task Force
    Sep 17, 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 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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