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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.

Total expenses 2022

Reports

  • Acknowledgements

    EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2022:

    Patient Organisations and Public Entities

    EURORDIS would like to thank the following organisations for their highly valued support in 2022:

    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 2022

     

    European Commission (DG Research)

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

    • The European Joint Programme on Rare Diseases (EJP RD)
    • ERICA: European Rare Disease Research Coordination and Support Action consortium
    • The Next Generation Health Technology Assessment (HTx)
    • Solve-RD – Solving the Unsolved Rare Diseases
    • More-EUROPA – More Effectively Using Registries to support Patient-centered Regulatory and HTA Decision-making
    • Remedi4All
    • The Innovative Medicines Initiative Joint Undertaking (IMI JU) projects:
      • conect4children (c4c)
      • Screen4Care
      • 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 77 different health sector corporate donors in 2022. Health sector 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 breakdown of each company’s donations by project is detailed on the “Corporate revenue” tab of the “Financial Information” section.

    Top five donors

    1

    2

    Takeda

    3

    4

    Roche

    5

    Novartis Gene Therapies logo

    Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

    aeglea logo Agios Alexion Alira Health  Alnylam AMGEN Amicus TherapeuticsAmryt logo Audentes AstellasAvrobio logo Bayer Schering Pharma AGBeiGene logo BioAgilytix logo BioCryst logo Biogen Idec Biomarin Bionical Emas logo  Blueprint medicines boehringer-ingelheim logoBRANDING SCIENCE logo bridge-bioBristol Myers Squibb logoCamurus logoChiesi ClinigenCSL Vifor logo   CytokineticsDaiichi Sankyo logoFerrer logo    Galapagos logoGilead Grifols Hansa HealX  IlluminaIncyte logo  insmedIonis logo Ipsen IQVIA Janssen Jazz PharmaceuticalsKYOWA KIRIN logo   LundbeckLysogene-Q Mereo BioPharma logoModerna Logo MSD NeurogeneNovo Nordisk logoOpenApp logo  OrchardOrphalan logoOvid Therapeutics logo  ParexelPassage Bio logo  PTC Therapeutics Recordati RegenXBio  Saniona logoSanofi logo Santen logo  SareptaSciensus logo SOBI  Travere Therapeutics UCBUltragenyx logo Vertex  VOZ  Zambon

    Foundations and non profits

    Every Life Foundation logoFoundation Ipsen Chan Zuckerberg Initiative logo

     

     

    Special mention

    We also would like to sincerely thank all the generous individuals and organisations from across many countries who made a gift to EURORDIS in 2022.


  • Revenue
    Revenue Amount (€) Percentage
    Patient Organisations 1 064 197 16%
    Individuals 901 118 14%
    European Commission 1 703 087 26%
    Corporates  2 378 856 37%
    Not for Profit Organisations 311 206 5%
    Event Fees 57 680 1%
    Miscellaneous 50 408 1%
    Sub-total 6 466 552 100%
    Recovery of provisions 25 428
    Total Revenue 6 491 980  
  • Expenses
    Expenses Amount (€) Percentage
    Staff 3 852 318 60%
    Volunteers 848 851 13%
    Logistics 620 036 10%
    Services 1 025 623 16%
    Purchase 85 143 1%
    Miscellaneous 29 310 0%
    Sub-total 6 461 281 100%
    Contingency and loss provisions 28 667 0%
    Total Expenses 6 489 948  
    Result 2 032

     

  • Corporate revenue

    Pharmaceutical & Biotechnology Companies

    Company Amount (€) % of Revenue
    AEGLEA  5 000 0,08%
    AGIOS  5 000 0,08%
    ALEXION – ASTRAZENECA RARE DISEASE
    75 000 1,16%
    ALNYLAM  30 000 0,46%
    AMGEN  10 000 0,15%
    AMICUS THERAPEUTICS 57 150 0,88%
    AMRYT PHARMA 10 000 0,15%
    ARGENX  10 000 0,15%
    ASTELLAS  10 000 0,15%
    AVROBIO 5 000 0,08%
    BAYER AG 5 000 0,08%
    BEIGENE 5 000 0,08%
    BIOCRYST  10 000 0,15%
    BIOGEN  50 000 0,77%
    BIOMARIN 25 000 0,39%
    BLUEPRINT MEDICINES 10 000 0,15%
    BOEHRINGER INGELHEIM  55 000 0,85%
    BRIDGEBIO  5 000 0,08%
    BRISTOL-MYERS SQUIBB (BMS) 65 000 1,01%
    CAMURUS  5 000 0,08%
    CHIESI 100 000 1,55%
    CSL BEHRING 80 000 1,24%
    CYTOKINETICS, INC. 30 000 0,46%
    DAIICHI SANKYO  25 000 0,39%
    FERRER 5 000 0,08%
    GALAPAGOS  5 000 0,08%
    GILEAD  10 000 0,15%
    GRIFOLS  5 000 0,08%
    HORIZON THERAPEUTICS 120 000 1,86%
    INCYTE 10 000 0,15%
    INSMED IRELAND  5 000 0,08%
    IONIS  10 000 0,15%
    IPSEN  30 000 0,46%
    JANSSEN, a J&J company 90 000 1,39%
    JAZZ PHARMACEUTICALS 5 000 0,08%
    KYOWA KIRIN 45 000 0,7%
    LUNDBECK  5 000 0,08%
    LYSOGENE 5 000 0,08%
    MEREO BIOPHARMA  5 000 0,08%
    MODERNA 10 000 0,15%
    MSD EUROPE 10 000 0,15%
    NEUROGENE  5 000 0,08%
    NOVARTIS 120 000 1,86%
    NOVO NORDISK 10 000 0,15%
    ORCHARD THERAPEUTICS 25 000 0,39%
    ORPHALAN 10 000 0,15%
    OVID THERAPEUTICS 5 000 0,08%
    PASSAGE BIO 5 000 0,08%
    PFIZER 140 000 2,16%
    PTC THERAPEUTICS 50 000 0,77%
    RECORDATI RARE DISEASES 35 000 0,54%
    REGENXBIO 5 000 0,08%
    ROCHE 135 000 2,09%
    SANIONA 5 000 0,08%
    SANOFI GENZYME 115 000 1,78%
    SANTEN  10 000 0,15%
    SAREPTA THERAPEUTICS 10 000 0,15%
    SOBI 45 000 0,7%
    TAKEDA  182 000 2,81%
    TRAVERE THERAPEUTICS  5 000 0,08%
    UCB  25 000 0,39%
    ULTRAGENYX 35 000 0,54%
    VERTEX  80 000 1,24%
    VIFOR PHARMA  40 000 0,62%
    ZAMBON  5 000 0,08%
    Grand Total 2 164 150 33,47%

    Other Health Sector Companies

    Company Amount (€) % of Revenue
    ALIRA HEALTH  5 000 0,08%
    BIOAGILYTIX LABS  19 500 0,30%
    BRANDING SCIENCE
    3 830 0,06%
    CLINIGEN  10 000 0,15%
    HEALX 5 000 0,08%
    ICON  5 000 0,08%
    ILLUMINA  124 305 1,92%
    IQVIA 5 000 0,08%
    OPENAPP 5 000 0,08%
    PAREXEL  10 000 0,15%
    SCIENSUS  10 000 0,15%
    VOZ ADVISORS 15 000 0,23%
    Grand Total 217 635 3,36%