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
Rare Disease Policy
About Rare Diseases
About Medicines For Rare Diseases
With EURORDIS
These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures do not include provisions.
EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2023:
EURORDIS would like to thank the following organisations for their highly valued support in 2023:
The “AFM Téléthon”, for the annual core activities grant and the office space they make available to the organisation free of charge.
DG Health and Food Safety, for its essential contribution to the following grants:
DG Research and Innovation, for its essential contribution to the following projects:
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.
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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 | 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 | 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 Meetings |
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Services | 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 |
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Pharmaceutical & Biotechnology Companies |
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---|---|---|
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 |
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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 |