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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 (Revenue, 5 970 k€ — Expenses, 5 617 k€) do not include provisions.

Reports

  • Acknowledgements

    EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2021:

    Patient Organisations and Public Entities

    EURORDIS would like to thank the following organisations for their highly valued support in 2021:

    AFM Téléthon

    AFM Association Française contre les MyopathiesThe “Association Française contre les Myopathies”, for the annual core activities grant and the office space they make available to the organisation free of charge.

    European Commission

    logo EAHC European Union

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

    • The Operating Grant for year 2021
    • Rare 2030, Foresight in Rare Diseases Policy
    • RD-Code project

     

    European Commission (DG Research)

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

    • The European Joint Programme Rare Diseases (EJP)
    • The Next Generation Health Technology Assessment (HTx)
    • The Solve-RD Project -Solving the Unsolved Rare Diseases
    • European Rare disease research coordination and
      support action (ERICA)
    • The Innovative Medicines Initiative-Joint Undertaking (IMIJU) projects:
      • conect4children, a Collaborative Network for European Clinical Trials For Children
      • ‘Shortening the path to rare disease diagnosis by using newborn genetic screening and digital technologies’ — ‘SCREEN4CARE

    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 2021. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European 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 and the Rare Impact project. 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

    Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

    Aeglea Agios Alexion Alira Health  Alnylam AMGEN Amicus Therapeutics Audentes Astellas Bayer Schering Pharma AG BioAgilytix logo BioCryst logo Biogen Idec Biomarin Bionical Emas logo BlueBird Bio Blueprint medicines boehringer-ingelheim logo bridge-bioBristol Myers Squibb logo Camurus logoChiesi Clinigen   CytokineticsDaiichi Sankyo logoEditas logo  Enzyvant EUSA Pharma GileadGalapagos logo Grifols Hansa HealX Horizon Pharma USA Illumina ICON insmedIonis logo Ipsen IQVIA Janssen Jazz Pharmaceuticals Kyowa Kirin LEO pharma Lundbeck  Lysogene-Q Mereo BioPharma logo MSD Neurogene Novartis Oncology Orchard OVID Parexel ProQR PTC Therapeutics Recordati RegenXBio Sangamo Saniona logo Santen logo  SareptaSciensus logo SOBI Spark Taysha logoTravere Therapeutics UCB Vertex Vifor Pharma logo VOZ  Zambon

    Other contributors (in kind)

    DLA Piper

     

     

     

    Foundations and non profits

    AIPM LogoAIPM LogoEvery 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 2021.


  • Revenue
    Revenue Amount (€) Percentage
    Patient Organisations 976 134 16%
    Individuals 749 919 13%
    European Commission 1 622 543 27%
    Corporates  2 241 028 38%
    Not for Profit Organisations 355 042 6%
    Event Fees 1 585 0%
    Miscellaneous 24 163 0%
    Sub-total 5 970 413 100%
    Recovery of provisions 107 504
    Total Revenue 6 077 917  
  • Expenses
    Expenses Amount (€) Percentage
    Staff 3 578 630 64%
    Volunteers 706 376 13%
    Logistics 179 460 3%
    Services 1 033 718 18%
    Purchase 88 382 2%
    Miscellaneous 30 515 1%
    Sub-total 5 617 082 100%
    Contingency and loss provisions 53 205 1%
    Total Expenses 5 670 287  
    Result 407 631

     

  • Corporate Revenue

    Pharmaceutical & Biotechnology Companies

    Company Amount (€) % of Revenue
    AEGLEA BIOTHERAPEUTICS 5 000 0,08%
    AGIOS PHARMACEUTICALS INC. 5 000 0,08%
    ALEXION SERVICES EUROPE 75 000 1,26%
    ALNYLAM NETHERLANDS BV 20 000 0,33%
    AMGEN EUROPE 10 000 0,17%
    AMICUS THERAPEUTICS UK LTD 20 000 0,33%
    ARGENX BVBA 10 000 0,17%
    ASTELLAS GENE THERAPIES (ex Andentes) 30 000 0,50%
    BAYER AG 5 000 0,08%
    BIOCRYST PHARMACEUTICALS, INC 10 000 0,17%
    BIOGEN (Czech Republic) s.r.o. 35 000 0,59%
    BIOMARIN 35 000 0,59%
    BLUEBIRD BIO 20 000 0,33%
    BLUEPRINT MEDICINES 10 000 0,17%
    BOEHRINGER INGELHEIM INTERNATIONAL GMBH 30 000 0,50%
    BRIDGEBIO  5 000 0,08%
    BRISTOL-MYERS SQUIBB (BMS) 82 000 1,37%
    CAMURUS AB 5 000 0,08%
    CHIESI 80 000 1,34%
    CSL BEHRING 100 000 1,67%
    CYTOKINETICS, INC. 30 000 0,50%
    DAIICHI SANKYO EUROPE GMBH 10 000 0,17%
    EDITAS MEDICINE 20 000 0,33%
    ENZYVANT 5 000 0,08%
    EUSA PHARMA 5 000 0,08%
    GALAPAGOS GMBH 5 000 0,08%
    GILEAD SCIENCES BELUX 10 000 0,17%
    GRIFOLS S.A. 5 000 0,08%
    HANSA BIOPHARMA AB 10 000 0,17%
    HORIZON THERAPEUTICS 55 000 0,92%
    INSMED IRELAND LTD. 5 000 0,08%
    IONIS PHARMACEUTICALS, INC. 10 000 0,17%
    IPSEN PHARMA 25 000 0,42%
    JANSSEN, a J&J company 75 000 1,26%
    JAZZ PHARMACEUTICALS 5 000 0,08%
    KYOWA KIRIN 45 000 0,75%
    LEO PHARMA A/S 20 000 0,33%
    LUNDBECK A/S 5 000 0,08%
    LYSOGENE 5 000 0,08%
    MEREO BIOPHARMA GROUP PLC 5 000 0,08%
    MSD EUROPE 10 000 0,17%
    NEUROGENE INC. 5 000 0,08%
    NOVARTIS 80 000 1,34%
    ORCHARD THERAPEUTICS 30 000 0,50%
    OVID THERAPEUTICS 5 000 0,08%
    PFIZER 140 000 2,34%
    PROQR THERAPEUTICS 5 000 0,08%
    PTC THERAPEUTICS 60 000 1,00%
    RECORDATI RARE DISEASES 35 000 0,59%
    REGENXBIO INC. 15 000 0,25%
    ROCHE 125 000 2,09%
    SANGAMO THERAPEUTICS 5 000 0,08%
    SANIONA 5 000 0,08%
    SANOFI GENZYME 160 000 2,68%
    SANTEN PHARMACEUTICAL 10 000 0,17%
    SAREPTA THERAPEUTICS 20 000 0,33%
    SPARK THERAPEUTICS, INC. 15 000 0,25%
    SWEDISH ORPHAN BIOVITRUM BVBA 45 000 0,75%
    TAKEDA PHARMACEUTICALS INTERNATIONAL AG 240 000 4,02%
    TAYSHA GENE THERAPIES 25 000 0,42%
    TRAVERE THERAPEUTICS (ex Retrophin) 5 000 0,08%
    UCB BIOPHARMA SPRL 10 000 0,17%
    ULTRAGENYX 10 000 0,17%
    VERTEX PHARMACEUTICALS 80 000 1,34%
    VIFOR PHARMA GROUP 20 000 0,33%
    ZAMBON S.P.A. 5 000 0,08%
    Grand Total 2 112 000 35,19%

    Other Health Sector Companies

    Company Amount (€) % of Revenue
    ALIRA HEALTH SAS 5 000 0,08%
    APARITO 1 000 0,02%
    BIOAGILYTIX LABS LLC 4 500 0,08%
    BIONICAL EMAS 5 000 0,08%
    CLINIGEN GROUP 5 000 0,08%
    HEALX 5 000 0,08%
    ICON CLINICAL RESEARCH S.A.R.L 10 000 0,17%
    ILLUMINA CAMBRIDGE LTD. 31 000 0,52%
    IQVIA 5 000 0,08%
    PAREXEL INTERNATIONAL 10 000 0,17%
    SCIENSUS INTERNATIONAL B.V. 10 000 0,17%
    VOZ ADVISORS 15 000 0,25%
    Grand Total 106 500 1,78%

    Corporates Outside the Health Sector

    Company Amount (€) % of Revenue
    ANA MERLINO 2 100 0,04%
    MEDICA TALENT GROUP 6 000 0,10%
    MAYNARD LEIGH 4 100 0,07%
    DLA PIPER 10 328,41 0,17%
    Grand Total 22 528,41 0,38%
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