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Our Funding

These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures do not include provisions.

Reports

  • Acknowledgements

    EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2023:

    Patient Organisations and Public Entities

    EURORDIS would like to thank the following organisations for their highly valued support in 2023:

    AFM Téléthon

    AFM TELETHON logo

    The “AFM Téléthon”, for the annual core activities grant and the office space they make available to the organisation free of charge.

    European Commission

    DG Health and Food Safety, for its essential contribution to the following grants:

    • The Operating Grant for year 2023

     

    European Commission (DG Research)

    DG Research and Innovation, for its essential contribution to the following projects:

    • EJP-RD: The European Joint Programme on Rare Diseases
    • ERICA: European Rare Disease Research Coordination and Support Action consortium
    • HTx: The Next Generation Health Technology Assessment
    • Solve-RD: Solving the Unsolved Rare Diseases
    • EUCAPA: European Capacity Building for Patients
    • More-EUROPA: More Effectively Using Registries to support Patient-centered Regulatory and HTA Decision-making
    • Remedi4All: Building a sustainable European innovation platform to enhance the repurposing of medicines for all
    • The Innovative Medicines Initiative Joint Undertaking (IMI JU) projects:
      • Conect4children: Collaborative Network for European Clinical Trials for Children
      • Screen4Care: Shortening the path to rare disease diagnosis by using newborn genetic screening and digital technologies
      • FACILITATE: FrAmework for ClInicaL trIal participants’ daTA reutilization for a fully Transparent and Ethical ecosystem

    Health Sector Corporates

    EURORDIS appreciates the contributions received from health sector companies. Ensuring a sustained variety of funding is key to minimise potential conflicts of interest. EURORDIS had 76 different corporate donors in 2023. These companies have supported EURORDIS through the EURORDIS Round Table of Companies, the EURORDIS Membership Meetingthe EURORDIS Black Pearl Awards, as well as international initiatives such as Rare Disease DayRare BarometerRare Diseases InternationalEURORDIS Open Academy and multi-lingual communications, as well as through contributions supporting project development, the EURORDIS Ukraine Response programme, the Turkey Emergency Response and unsolicited donations. The breakdown of each company’s contributions by project is detailed on the EURORDIS website on the “Corporate revenue” tab of the “Our Funding” section. 

    Top five donors

    1

    2

    Takeda

    3

    4

    Roche

    5

    Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

    Foundations and nonprofits

    Chan zuckerberg Initiative logoEvery Life Foundation logoFoundation IpsenMarigold Foundation logo

     

     

    Special mention

    We also would like to sincerely thank all the generous individuals, organisations and companies from across many countries who made a gift to EURORDIS in 2023. 


  • Revenue
    Revenue Amount (€) Percentage
    Patient Organisations 1 028 212 15%
    Volunteers 617 435 9%
    European Commission 2 374 629 34%
    Corporates  2 333 874 33%
    Not for Profit Organisations 449 687 6%
    Event Fees 96 750 1%
    Miscellaneous 97 583 1%
    Sub-total 6 998 170 100%
    Recovery of provisions 108 251 2%
    Total Revenue 7 106 420  
  • Expenses
    Expenses Amount (€) Percentage
    Staff 4 314 773 62%
    Volunteers 617 435 9%
    Logistics 724 760 10%
    Services 1 082 313 16%
    Purchase 90 092 1%
    Miscellaneous 120 223 2%
    Sub-total 6 949 596 100%
    Contingency and loss provisions 74 946 1%
    Total Expenses 7 024 542  
    Result 81 879

     

  • Corporate revenue

     

    Pharmaceutical & Biotechnology Companies

    Company Amount (€) % of Revenue
    AEGLEA  6 000 0,08%
    AGIOS  6 000 0,08%
    ALEXION – ASTRAZENECA RARE DISEASE
    80 000 1,13%
    ALNYLAM  22 000 0,31%
    AMGEN 12 000 0,17%
    AMICUS THERAPEUTICS 42 000 0,59%
    AMRYT PHARMA 12 000 0,17%
    AMYLYX 22 000 0,31%
    ARGENX  12 000 0,17%
    ASTELLAS  22 000 0,31%
    ASTRIA THERAPEUTICS 6 000 0,08%
    AZAFAROS 6 000 0,08%
    BAYER AG  6 000 0,08%
    BEIGENE 12 000 0,17%
    BIOCRYST  12 000 0,17%
    BIOGEN  31 000 0,44%
    BIOMARIN 42 000 0,59%
    BLUEPRINT MEDICINES 12 000 0,17%
    BOEHRINGER INGELHEIM  57 000 0,80%
    BRIDGEBIO  6 000 0,08%
    BRISTOL-MYERS SQUIBB (BMS) 67 000 0,94%
    CAMURUS  6 000 0,08%
    CHIESI 72 000 1,01%
    CSL BEHRING 85 000 1,20%
    CYTOKINETICS, INC. 32 000 0,45%
    DENALI THERAPEUTICS 6 000 0,08%
    EGETIS THERAPEUTICS 6 000 0,08%
    FERRER 6 000 0,08%
    GILEAD  12 000 0,17%
    GRIFOLS  6 000 0,08%
    GRIN Therapeutics 6 000 0,08%
    HORIZON THERAPEUTICS 142 000 2,00%
    IMMEDICA 31 100 0,44%
    INCYTE 6 000 0,08%
    INSMED IRELAND  6 000 0,08%
    IONIS  12 000 0,17%
    IPSEN  27 000 0,38%
    JANSSEN, a J&J company 67 000 0,94%
    JAZZ PHARMACEUTICALS 6 000 0,08%
    LUNDBECK  6 000 0,08%
    MERCK 6 000 0,08%
    MEREO BIOPHARMA  6 000 0,08%
    MODERNA 16 000 0,23%
    MSD EUROPE 6 000 0,08%
    NOVARTIS 70 000 0,99%
    NOVO NORDISK 12 000 0,17%
    ORCHARD THERAPEUTICS 27 000 0,38%
    ORPHALAN 10 000 0,14%
    OVID THERAPEUTICS 10 000 0,14%
    PASSAGE BIO 6 000 0,08%
    PFIZER 140 000 1,97%
    PHARMING 12 000 0,17%
    PTC THERAPEUTICS 62 000 0,87%
    RECORDATI RARE DISEASES 35 000 0,49%
    REGENXBIO 6 000 0,08%
    ROCHE 125 000 1,76%
    SANGAMO THERAPEUTICS 6 000 0,08%
    SANOFI GENZYME 115 000 1,62%
    SANTEN  12 000 0,17%
    SAREPTA THERAPEUTICS 12 000 0,17%
    SOBI 47 000 0,66%
    TAKEDA  170 000 2,39%
    TRAVERE THERAPEUTICS  41 000 0,58%
    UCB  80 000 1,13%
    ULTRAGENYX EUROPE GMBH 12 000 0,17%
    IRONWOOD PHARMACEUTICALS 12 000 0,17%
    VERTEX  57 000 0,8%
    ZAMBON  6 000 0,08%
    Miscellaneous 100
    Brought Forward 99 365
    Grand Total 2 251 565

    Other Health Sector Companies

    Company Amount (€) % of Revenue
    ADELPHI  1 500 0,02%
    ALIRA HEALTH  6 000 0,08%
    CLINIGEN  25 000 0,35%
    ILLUMINA  12 000 0,17%
    IQVIA 6 000 0,08%
    PAREXEL  12 000 0,17%
    SCIENSUS  12 000 0,17%
    VOZ ADVISORS 6 000 0,08%
    Miscellaneous 1 609
    Grand Total 82 109