These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures do not include provisions.
About Us
Our Funding
Reports
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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
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
DG Research and Innovation, for its essential contribution to the following projects:
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EJP-RD: The European Joint Programme on Rare Diseases
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ERICA: European Rare Disease Research Coordination and Support Action consortium
- HTx: The Next Generation Health Technology Assessment
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Solve-RD: Solving the Unsolved Rare Diseases
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EUCAPA: European Capacity Building for Patients
- More-EUROPA: More Effectively Using Registries to support Patient-centered Regulatory and HTA Decision-making
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Remedi4All: Building a sustainable European innovation platform to enhance the repurposing of medicines for all
- The Innovative Medicines Initiative Joint Undertaking (IMI JU) projects:
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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
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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 Meeting, the EURORDIS Black Pearl Awards, as well as international initiatives such as Rare Disease Day, Rare Barometer, Rare Diseases International, EURORDIS 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
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2
3
4
5
Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates
Foundations and nonprofits
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.
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Revenue
Revenue Amount (€) Percentage Patient Organisations 1 028 212 15% Financial contributions 670 000 10% – AFM Telethon 670 000 10% – Other Patient Organisations 0 0% In kind contributions (AFM) 237 975 3% Membership fees 120 237 2% Volunteers 617 435 9% European Commission 2 374 629 34% DG Research 1 025 545 15% DG Health and consumers 1 349 213 19% DG Employment -129 0% EMA contributions (*) 0 0% Corporates 2 333 874 33% Pharma. and Biotech Companies 2 251 565 32% Other Health Sector Corporates 82 109 1% Outside Health Sector Corporates 200 0% Not for Profit Organisations 449 687 6% Pharma. and Biotech Foundations 127 166 2% Other Health Sector NPOs 79 714 1% Outside Health Sector NPOs 242 808 3% Event Fees 96 750 1% Miscellaneous 97 583 1% Donations 13 122 0% Reimbursements 27 666 0% Others 56 795 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% Wages and charges 4 047 531 58% Other salaries 226 401 3% Training and other costs 40 842 1% Volunteers 617 435 9% Representatives and task forces 617 435 9% Project, office and translators 0 0% Logistics 724 760 10% Travels and subsistence 462 238 7% Event logistics and catering 247 911 4% Virtual events 14 611 0% In kind contributions
covering travel/accommodation costs for EMA MeetingsServices 1 082 313 16% Fees 324 869 5% Partners 210 210 3% Telecom and post 39 950 1% Rent 333 572 5% Other services 173 710 2% Purchase 90 092 1% Office furniture 21 308 0% Amortisation 33 646 1% Communications, Publications 22 077 0% Other purchases 13 061 0% Miscellaneous 120 223 2% Financial expenses, Insurance, Tax 38 147 1% Exceptional expenses 82 076 1% 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%
EURORDIS Round Table of Companies 6 000 AGIOS 6 000 0,08%
EURORDIS Round Table of Companies 6 000 ALEXION – ASTRAZENECA RARE DISEASE
80 000 1,13% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 10 000 EURORDIS International Initiatives 25 000 EURORDIS Membership Meeting 15 000 ALNYLAM 22 000 0,31% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 AMGEN 12 000 0,17% EURORDIS Round Table of Companies 12 000 AMICUS THERAPEUTICS 42 000 0,59% EURORDIS Round Table of Companies 12 000 Rare Barometer 10 000 EURORDIS Rare Response fund for Ukraine 20 000 AMRYT PHARMA 12 000 0,17% EURORDIS Round Table of Companies 12 000 AMYLYX 22 000 0,31% Black Pearl Awards 10 000 EURORDIS Round Table of Companies 12 000 ARGENX 12 000 0,17% EURORDIS Round Table of Companies 12 000 ASTELLAS 22 000 0,31% EURORDIS Round Table of Companies 12 000 Rare Barometer 12 000 ASTRIA THERAPEUTICS 6 000 0,08% EURORDIS Round Table of Companies 6 000 AZAFAROS 6 000 0,08% EURORDIS Round Table of Companies 6 000 BAYER AG 6 000 0,08% EURORDIS Round Table of Companies 6 000 BEIGENE 12 000 0,17% EURORDIS Round Table of Companies 12 000 BIOCRYST 12 000 0,17% EURORDIS Round Table of Companies 12 000 BIOGEN 31 000 0,44% EURORDIS Round Table of Companies 6 000 EURORDIS Membership Meeting 15 000 Black Pearl Awards 10 000 BIOMARIN 42 000 0,59% EURORDIS Round Table of Companies 12 000 Rare Barometer 15 000 EURORDIS Membership Meeting 15 000 BLUEPRINT MEDICINES 12 000 0,17% EURORDIS Round Table of Companies 12 000 BOEHRINGER INGELHEIM 57 000 0,80% EURORDIS Round Table of Companies 12 000 EURORDIS Membership Meeting 15 000 Rare Barometer 10 000 Key funding 20 000 BRIDGEBIO 6 000 0,08% EURORDIS Round Table of Companies 6 000 BRISTOL-MYERS SQUIBB (BMS) 67 000 0,94% EURORDIS Round Table of Companies 12 000 Rare Barometer 20 000 EURORDIS International Initiatives 35 000 CAMURUS 6 000 0,08% EURORDIS Round Table of Companies 6 000 CHIESI 72 000 1,01% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 EURORDIS Membership Meeting 15 000 EURORDIS International Initiatives 35 000 CSL BEHRING 85 000 1,20% EURORDIS Membership Meeting 15 000 EURORDIS Round Table of Companies 30 000 Black Pearl Awards 20 000 Rare Barometer 15 000 Project Development 5 000 CYTOKINETICS, INC. 32 000 0,45% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 20 000 DENALI THERAPEUTICS 6 000 0,08% EURORDIS Round Table of Companies 6 000 EGETIS THERAPEUTICS 6 000 0,08% EURORDIS Round Table of Companies 6 000 FERRER 6 000 0,08% EURORDIS Round Table of Companies 6 000 GILEAD 12 000 0,17% EURORDIS Round Table of Companies 12 000 GRIFOLS 6 000 0,08% EURORDIS Round Table of Companies 6 000 GRIN Therapeutics 6 000 0,08% EURORDIS Round Table of Companies 6 000 HORIZON THERAPEUTICS 142 000 2,00% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 20 000 EURORDIS Membership Meeting 15 000 EURORDIS Rare Response fund for Ukraine 70 000 EURORDIS International Initiatives 25 000 IMMEDICA 31 100 0,44% EURORDIS Membership Meeting 15 000 EURORDIS Round Table of Companies 12 000 Unrestricted 4 100 INCYTE 6 000 0,08% EURORDIS Round Table of Companies 6 000 INSMED IRELAND 6 000 0,08% EURORDIS Round Table of Companies 6 000 IONIS 12 000 0,17% EURORDIS Round Table of Companies 12 000 IPSEN 27 000 0,38% EURORDIS Round Table of Companies 12 000 EURORDIS Membership Meeting 15 000 JANSSEN, a J&J company 67 000 0,94% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 25 000 Rare Barometer 15 000 EURORDIS Membership Meeting 15 000 JAZZ PHARMACEUTICALS 6 000 0,08% EURORDIS Round Table of Companies 6 000 LUNDBECK 6 000 0,08% EURORDIS Round Table of Companies 6 000 MERCK 6 000 0,08% EURORDIS Round Table of Companies 6 000 MEREO BIOPHARMA 6 000 0,08% EURORDIS Round Table of Companies 6 000 MODERNA 16 000 0,23% Black Pearl Awards 10 000 EURORDIS Round Table of Companies 6 000 MSD EUROPE 6 000 0,08% EURORDIS Round Table of Companies 6 000 NOVARTIS 70 000 0,99% EURORDIS Round Table of Companies 30 000 Project Development 5 000 EURORDIS International Initiatives 35 000 NOVO NORDISK 12 000 0,17% EURORDIS Round Table of Companies 12 000 ORCHARD THERAPEUTICS 27 000 0,38% EURORDIS Round Table of Companies 12 000 EURORDIS Membership Meeting 15 000 ORPHALAN 10 000 0,14% Black Pearl Awards 10 000 OVID THERAPEUTICS 10 000 0,14% Black Pearl Awards 10 000 PASSAGE BIO 6 000 0,08% EURORDIS Round Table of Companies 6 000 PFIZER 140 000 1,97% EURORDIS Membership Meeting 20 000 EURORDIS Round Table of Companies 30 000 Key Funding 80 000 Project Development 10 000 PHARMING 12 000 0,17% EURORDIS Round Table of Companies 12 000 PTC THERAPEUTICS 62 000 0,87% Black Pearl Awards 10 000 EURORDIS Round Table of Companies 12 000 EURORDIS Membership Meeting 15 000 EURORDIS International Initiatives 25 000 RECORDATI RARE DISEASES 35 000 0,49% Black Pearl Awards 10 000 EURORDIS International Initiatives 25 000 REGENXBIO 6 000 0,08% EURORDIS Round Table of Companies 6 000 ROCHE 125 000 1,76% EURORDIS Membership Meeting 15 000 EURORDIS Round Table of Companies 30 000 Black Pearl Awards 25 000 EURORDIS International Initiatives 40 000 Project Development 15 000 SANGAMO THERAPEUTICS 6 000 0,08% EURORDIS Round Table of Companies 6 000 SANOFI GENZYME 115 000 1,62% EURORDIS Membership Meeting 15 000 EURORDIS Round Table of Companies 30 000 Rare Barometer 30 000 EURORDIS International Initiatives 40 000 SANTEN 12 000 0,17% EURORDIS Round Table of Companies 12 000 SAREPTA THERAPEUTICS 12 000 0,17% EURORDIS Round Table of Companies 12 000 SOBI 47 000 0,66% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 Rare Barometer 10 000 Project Development 15 000 TAKEDA 170 000 2,39% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 25 000 EURORDIS Membership Meeting 20 000 EURORDIS International Initiatives 95 000 TRAVERE THERAPEUTICS 41 000 0,58% EURORDIS Round Table of Companies 6 000 EURORDIS Rare Response Fund for Ukraine 20 000 Turkey Emergency Response 15 000 UCB 80 000 1,13% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 35 000 EURORDIS Membership Meeting 15 000 ULTRAGENYX EUROPE GMBH 12 000 0,17% EURORDIS Round Table of Companies 12 000 IRONWOOD PHARMACEUTICALS 12 000 0,17% EURORDIS Round Table of Companies 12 000 VERTEX 57 000 0,8% EURORDIS Membership Meeting 15 000 EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 EURORDIS International Initiatives 20 000 ZAMBON 6 000 0,08% EURORDIS Round Table of Companies 6 000 Miscellaneous 100 Brought Forward 99 365 EURORDIS Rare Response Fund for Ukraine 99 365 Grand Total 2 251 565 Other Health Sector Companies
Company Amount (€) % of Revenue ADELPHI 1 500 0,02% Rare Disease Day 1 500 ALIRA HEALTH 6 000 0,08% EURORDIS Round Table of Companies 6 000 CLINIGEN 25 000 0,35% EURORDIS Membership Meeting 15 000 Black Pearl Awards 10 000 ILLUMINA 12 000 0,17% EURORDIS Round Table of Companies 12 000 IQVIA 6 000 0,08% EURORDIS Round Table of Companies 6 000 PAREXEL 12 000 0,17% EURORDIS Round Table of Companies 10 000 SCIENSUS 12 000 0,17% EURORDIS Round Table of Companies 12 000 VOZ ADVISORS 6 000 0,08% EURORDIS Round Table of Companies 5 000 Miscellaneous 1 609 Grand Total 82 109
Financial reports
- Financial Report 2023 (PDF 2,9M)
- Financial Report 2022 (PDF 2,3M)
- Financial Report 2021 (PDF 1,8 M)
- Financial Report 2020 (PDF 2,4 M)
- Financial Report 2019 (PDF 3,2 M)
- Financial Report 2018 (PDF 2,9 M)
- Financial Report 2017 (PDF 4,6 M)
- Financial Report 2016 (PDF 1,2 M)
- Financial Report 2015 (PDF 3,0 M)
- Financial Report 2014 (PDF 1,7 M)
- Financial Report 2013 (PDF 1,3 M)
- Financial Report 2012 (PDF 1,2 M)
- Financial Report 2011 (PDF 3,9 M)
- Financial Report 2010 (PDF 626 KB)
- Financial Report 2009 (PDF 2.7 M)