These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures do not include provisions.


About Rare Diseases
About Treatments For Rare Diseases
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 2022:
EURORDIS would like to thank the following organisations for their highly valued support in 2022:
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 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.
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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 | 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 | 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 Meetings |
||
Services | 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 |
|
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% |