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 2022:
Patient Organisations and Public Entities
EURORDIS would like to thank the following organisations for their highly valued support in 2022:
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 2022
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 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 breakdown of each company’s donations by project is detailed on the “Corporate revenue” tab of the “Financial Information” section.
Top five donors
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2
3
4
5
Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates
Foundations and non profits
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.
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Revenue
Revenue Amount (€) Percentage Patient Organisations 1 064 197 16% Financial contributions 717 742 11% – AFM Telethon 670 000 10% – Other Patient Organisations 47 742 1% In kind contributions (AFM) 238 925 4% Membership fees 107 530 2% Individuals 901 118 14% Volunteers 848 851 13% Donations 52 267 1% European Commission 1 703 087 26% DG Research 694 028 11% DG Health and consumers 994 298 15% DG Employment 14 761 0% EMA contributions (*) Corporates 2 378 856 37% Pharma. and Biotech Companies 2 159 130 33% Other Health Sector Corporates 219 369 3% Outside Health Sector Corporates 357 0% Not for Profit Organisations 311 206 5% Pharma. and Biotech Foundations 121 073 2% Other Health Sector NPOs 56 751 1% Outside Health Sector NPOs 133 382 2% Event Fees 57 680 1% Miscellaneous 50 408 1% Reimbursements 23 576 0% Others 26 832 0% 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% Wages and charges 3 644 720 56% Other salaries 163 147 3% Training and other costs 44 451 1% Volunteers 848 851 13% Representatives and task forces 665 971 10% Project, office and translators 182 880 3% Logistics 620 036 10% Travels and subsistence 294 761 5% Event logistics and catering 74 527 1% Virtual events 235 987 4% In kind contributions
covering travel/accommodation costs for EMA MeetingsServices 1 025 623 16% Fees 295 067 5% Partners 161 755 3% Telecom and post 55 789 1% Rent 333 160 5% Other services 179 853 3% Purchase 85 143 1% Office furniture 28 189 0% Amortisation 33 398 1% Communications, Publications 11 980 0% Other purchases 11 576 0% Miscellaneous 29 310 0% Financial expenses, Insurance, Tax 29 310 0% Exceptional expenses 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%
EURORDIS Round Table of Companies 5 000 AGIOS 5 000 0,08%
EURORDIS Round Table of Companies 5 000 ALEXION – ASTRAZENECA RARE DISEASE
75 000 1,16% EURORDIS Round Table of Companies 25 000 Black Pearl Awards 10 000 EURORDIS International Initiatives 25 000 European Conference on Rare Diseases 15 000 ALNYLAM 30 000 0,46% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 10 000 Rare Barometer 10 000 AMGEN 10 000 0,15% EURORDIS Round Table of Companies 10 000 AMICUS THERAPEUTICS 57 150 0,88% EURORDIS Round Table of Companies 10 000 Rare Barometer 10 000 EURORDIS Rare Response fund for Ukraine 37 150 AMRYT PHARMA 10 000 0,15% EURORDIS Round Table of Companies 10 000 ARGENX 10 000 0,15% EURORDIS Round Table of Companies 10 000 ASTELLAS 10 000 0,15% EURORDIS Round Table of Companies 10 000 AVROBIO 5 000 0,08% EURORDIS Round Table of Companies 5 000 BAYER AG 5 000 0,08% EURORDIS Round Table of Companies 5 000 BEIGENE 5 000 0,08% EURORDIS Round Table of Companies 5 000 BIOCRYST 10 000 0,15% EURORDIS Round Table of Companies 10 000 BIOGEN 50 000 0,77% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 15 000 Black Pearl Awards 25 000 BIOMARIN 25 000 0,39% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 15 000 BLUEPRINT MEDICINES 10 000 0,15% EURORDIS Round Table of Companies 10 000 BOEHRINGER INGELHEIM 55 000 0,85% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 15 000 Rare Barometer 10 000 Awareness, Empowerment, and Networking 20 000 BRIDGEBIO 5 000 0,08% EURORDIS Round Table of Companies 5 000 BRISTOL-MYERS SQUIBB (BMS) 65 000 1,01% EURORDIS Round Table of Companies 10 000 Rare Barometer 20 000 EURORDIS International Initiatives 35 000 CAMURUS 5 000 0,08% EURORDIS Round Table of Companies 5 000 CHIESI 100 000 1,55% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 10 000 European Conference on Rare Diseases 15 000 EURORDIS International Initiatives 35 000 EURORDIS Rare Response fund for Ukraine 30 000 CSL BEHRING 80 000 1,24% European Conference on Rare Diseases 15 000 EURORDIS Round Table of Companies 25 000 Black Pearl Awards 20 000 Rare Barometer 15 000 Project Development 5 000 CYTOKINETICS, INC. 30 000 0,46% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 20 000 DAIICHI SANKYO 25 000 0,39% EURORDIS Round Table of Companies 25 000 FERRER 5 000 0,08% EURORDIS Round Table of Companies 5 000 GALAPAGOS 5 000 0,08% EURORDIS Round Table of Companies 5 000 GILEAD 10 000 0,15% EURORDIS Round Table of Companies 10 000 GRIFOLS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% HORIZON THERAPEUTICS 120 000 1,86% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 20 000 European Conference on Rare Diseases 15 000 EURORDIS Rare Response fund for Ukraine 50 000 EURORDIS International Initiatives 25 000 INCYTE 10 000 0,15% EURORDIS Round Table of Companies 10 000 INSMED IRELAND 5 000 0,08% EURORDIS Round Table of Companies 5 000 IONIS 10 000 0,15% EURORDIS Round Table of Companies 10 000 IPSEN 30 000 0,46% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 20 000 JANSSEN, a J&J company 90 000 1,39% EURORDIS Round Table of Companies 25 000 Black Pearl Awards 35 000 Rare Barometer 15 000 European Conference on Rare Diseases 15 000 JAZZ PHARMACEUTICALS 5 000 0,08% EURORDIS Round Table of Companies 5 000 KYOWA KIRIN 45 000 0,7% EURORDIS Round Table of Companies 10 000 EURORDIS International Initiatives 20 000 European Conference on Rare Diseases 15 000 LUNDBECK 5 000 0,08% EURORDIS Round Table of Companies 5 000 LYSOGENE 5 000 0,08% EURORDIS Round Table of Companies 5 000 MEREO BIOPHARMA 5 000 0,08% EURORDIS Round Table of Companies 5 000 MODERNA 10 000 0,15% Black Pearl Awards 10 000 MSD EUROPE 10 000 0,15% EURORDIS Round Table of Companies 10 000 NEUROGENE 5 000 0,08% EURORDIS Round Table of Companies 5 000 NOVARTIS 120 000 1,86% EURORDIS Round Table of Companies 25 000 European Conference on Rare Diseases 15 000 EURORDIS International Initiatives 20 000 Black Pearl Awards 10 000 EURORDIS Rare Response fund for Ukraine 50 000 NOVO NORDISK 10 000 0,15% EURORDIS Round Table of Companies 10 000 ORCHARD THERAPEUTICS 25 000 0,39% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 15 000 ORPHALAN 10 000 0,15% Black Pearl Awards 10 000 OVID THERAPEUTICS 5 000 0,08% EURORDIS Round Table of Companies 5 000 PASSAGE BIO 5 000 0,08% EURORDIS Round Table of Companies 5 000 PFIZER 140 000 2,16% European Conference on Rare Diseases 30 000 EURORDIS Round Table of Companies 25 000 Awareness, Empowerment, and Networking 75 000 Project Development 10 000 PTC THERAPEUTICS 50 000 0,77% European Conference on Rare Diseases 15 000 EURORDIS Round Table of Companies 10 000 EURORDIS International Initiatives 25 000 RECORDATI RARE DISEASES 35 000 0,54% Black Pearl Awards 10 000 EURORDIS International Initiatives 25 000 REGENXBIO 5 000 0,08% EURORDIS Round Table of Companies 5 000 ROCHE 135 000 2,09% European Conference on Rare Diseases 15 000 EURORDIS Round Table of Companies 25 000 Black Pearl Awards 25 000 EURORDIS International Initiatives 40 000 EURORDIS Rare Response fund for Ukraine 15 000 Project Development 15 000 SANIONA 5 000 0,08% EURORDIS Round Table of Companies 5 000 SANOFI GENZYME 115 000 1,78% European Conference on Rare Diseases 20 000 EURORDIS Round Table of Companies 25 000 Rare Barometer 30 000 EURORDIS International Initiatives 40 000 SANTEN 10 000 0,15% EURORDIS Round Table of Companies 10 000 SAREPTA THERAPEUTICS 10 000 0,15% EURORDIS Round Table of Companies 10 000 SOBI 45 000 0,7% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 10 000 Rare Barometer 10 000 Project Development 15 000 TAKEDA 182 000 2,81% EURORDIS Round Table of Companies 25 000 Black Pearl Awards 25 000 European Conference on Rare Diseases 30 000 EURORDIS International Initiatives 95 000 EURORDIS Rare Response fund for Ukraine 7 000 TRAVERE THERAPEUTICS 5 000 0,08% EURORDIS Round Table of Companies 5 000 UCB 25 000 0,39% EURORDIS Round Table of Companies 25 000 ULTRAGENYX 35 000 0,54% EURORDIS Round Table of Companies 10 000 European Conference on Rare Diseases 15 000 EURORDIS Rare Response fund for Ukraine 10 000 VERTEX 80 000 1,24% European Conference on Rare Diseases 20 000 EURORDIS Round Table of Companies 10 000 Black Pearl Awards 10 000 EURORDIS International Initiatives 40 000 VIFOR PHARMA 40 000 0,62% EURORDIS Round Table of Companies 10 000 Black Pearl Awards 10 000 Rare Barometer 10 000 EURORDIS Rare Response fund for Ukraine 10 000 ZAMBON 5 000 0,08% EURORDIS Round Table of Companies 5 000 Grand Total 2 164 150 33,47% Other Health Sector Companies
Company Amount (€) % of Revenue ALIRA HEALTH 5 000 0,08% EURORDIS Round Table of Companies 5 000 BIOAGILYTIX LABS 19 500 0,30% Unsolicited Donation 19 500 BRANDING SCIENCE
3 830 0,06% Unsolicited Donation 3 830 CLINIGEN 10 000 0,15% EURORDIS Round Table of Companies 10 000 HEALX 5 000 0,08% EURORDIS Round Table of Companies 5 000 ICON 5 000 0,08% EURORDIS Round Table of Companies 5 000 ILLUMINA 124 305 1,92% EURORDIS Round Table of Companies 10 000 Rare Barometer 19 275 EURORDIS Rare Response fund for Ukraine 95 030 IQVIA 5 000 0,08% EURORDIS Round Table of Companies 5 000 OPENAPP 5 000 0,08% EURORDIS Round Table of Companies 5 000 PAREXEL 10 000 0,15% EURORDIS Round Table of Companies 10 000 SCIENSUS 10 000 0,15% EURORDIS Round Table of Companies 10 000 VOZ ADVISORS 15 000 0,23% EURORDIS Round Table of Companies 5 000 Black Pearl Awards 10 000 Grand Total 217 635 3,36%
Financial reports
- 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)