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.
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Com a EURORDIS
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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.
EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2021:
EURORDIS would like to thank the following organisations for their highly valued support in 2021:
The “Association Française contre les Myopathies”, 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 2021. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European 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 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.
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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 2021.
Revenue | Amount (€) | Percentage |
---|---|---|
Patient Organisations | 976 134 | 16% |
Financial contributions | 651 480 | 11% |
– AFM Telethon | 600 000 | 10% |
– Other Patient Organisations | 51 480 | 1% |
In kind contributions (AFM) | 227 129 | 4% |
Membership fees | 97 525 | 2% |
Individuals | 749 919 | 13% |
Volunteers | 706 376 | 12% |
Donations | 43 543 | 1% |
European Commission | 1 622 543 | 27% |
DG Research | 456 758 | 8% |
DG Health and consumers | 1 165 785 | 20% |
DG Employment | ||
EMA contributions (*) | ||
Corporates | 2 241 028 | 38% |
Pharma. and Biotech Companies | 2 112 000 | 35% |
Other Health Sector Corporates | 106 500 | 2% |
Outside Health Sector Corporates | 22 528 | 0% |
Not for Profit Organisations | 355 042 | 6% |
Pharma. and Biotech Foundations | 12 000 | 0% |
Other Health Sector NPOs | 68 614 | 1% |
Outside Health Sector NPOs | 274 428 | 5% |
Event Fees | 1 585 | 0% |
Miscellaneous | 24 163 | 0% |
Reimbursements | 12 127 | 0% |
Others | 12 036 | 0% |
Sub-total | 5 970 413 | 100% |
Recovery of provisions | 107 504 | |
Total Revenue | 6 077 917 |
Expenses | Amount (€) | Percentage |
---|---|---|
Staff | 3 578 630 | 64% |
Wages and charges | 3 385 874 | 60% |
Other salaries | 151 245 | 3% |
Training and other costs | 41 511 | 1% |
Volunteers | 706 376 | 13% |
Representatives and task forces | 523 496 | 9% |
Project, office and translators | 182 880 | 3% |
Logistics | 179 460 | 3% |
Travels and subsistence | 56 687 | 1% |
Event logistics and catering | 20 897 | 0% |
Virtual events | 101 876 | 2% |
In kind contributions covering travel/accommodation costs for EMA Meetings |
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Services | 1 033 718 | 18% |
Fees | 540 910 | 10% |
Telecom and post | 39 167 | 1% |
Rent | 312 070 | 6% |
Other services | 141 571 | 3% |
Purchase | 88 382 | 2% |
Office furniture | 34 284 | 1% |
Amortisation | 33 469 | 1% |
Communications, Publications | 8 657 | 0% |
Other purchases | 11 972 | 0% |
Miscellaneous | 30 515 | 1% |
Financial expenses, Insurance, Tax | 29 350 | 1% |
Exceptional expenses | 1 165 | 0% |
Sub-total | 5 617 082 | 100% |
Contingency and loss provisions | 53 205 | 1% |
Total Expenses | 5 670 287 | |
Result | 407 631 |
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Pharmaceutical & Biotechnology Companies |
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---|---|---|
Company | Amount (€) | % of Revenue |
AEGLEA BIOTHERAPEUTICS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
AGIOS PHARMACEUTICALS INC. | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
ALEXION SERVICES EUROPE | 75 000 | 1,26% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Black Pearl Awards | 10 000 | 0,17% |
EURORDIS International Initiatives | 25 000 | 0,42% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
ALNYLAM NETHERLANDS BV | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
AMGEN EUROPE | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
AMICUS THERAPEUTICS UK LTD | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 10 000 | 0,17% |
ARGENX BVBA | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
ASTELLAS GENE THERAPIES (ex Andentes) | 30 000 | 0,50% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
BAYER AG | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
BIOCRYST PHARMACEUTICALS, INC | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
BIOGEN (Czech Republic) s.r.o. | 35 000 | 0,59% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 25 000 | 0,42% |
BIOMARIN | 35 000 | 0,59% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 15 000 | 0,25% |
BLUEBIRD BIO | 20 000 | 0,33% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
BLUEPRINT MEDICINES | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
BOEHRINGER INGELHEIM INTERNATIONAL GMBH | 30 000 | 0,50% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Awareness, Empowerment, and Networking | 20 000 | 0,33% |
BRIDGEBIO | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
BRISTOL-MYERS SQUIBB (BMS) | 82 000 | 1,37% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 20 000 | 0,33% |
EURORDIS International Initiatives | 32 000 | 0,54% |
CAMURUS AB | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
CHIESI | 80 000 | 1,34% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
Unsolicitated Donation | 10 000 | 0,17% |
EURORDIS International Initiatives | 35 000 | 0,59% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
CSL BEHRING | 100 000 | 1,67% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Black Pearl Awards | 20 000 | 0,33% |
Rare Barometer | 15 000 | 0,25% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
Project Development | 5 000 | 0,08% |
CYTOKINETICS, INC. | 30 000 | 0,50% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 20 000 | 0,33% |
DAIICHI SANKYO EUROPE GMBH | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
EDITAS MEDICINE | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 10 000 | 0,17% |
ENZYVANT | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
EUSA PHARMA | 5 000 | 0,08% |
Unsolicitated Donation | 5 000 | 0,08% |
GALAPAGOS GMBH | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
GILEAD SCIENCES BELUX | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
GRIFOLS S.A. | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
HANSA BIOPHARMA AB | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
HORIZON THERAPEUTICS | 55 000 | 0,92% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 20 000 | 0,33% |
EURORDIS International Initiatives | 25 000 | 0,42% |
INSMED IRELAND LTD. | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
IONIS PHARMACEUTICALS, INC. | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
IPSEN PHARMA | 25 000 | 0,42% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
JANSSEN, a J&J company | 75 000 | 1,26% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Black Pearl Awards | 35 000 | 0,59% |
Rare Barometer | 15 000 | 0,25% |
JAZZ PHARMACEUTICALS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
KYOWA KIRIN | 45 000 | 0,75% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
EURORDIS International Initiatives | 20 000 | 0,33% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
LEO PHARMA A/S | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 10 000 | 0,17% |
LUNDBECK A/S | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
LYSOGENE | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
MEREO BIOPHARMA GROUP PLC | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
MSD EUROPE | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
NEUROGENE INC. | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
NOVARTIS | 80 000 | 1,34% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 30 000 | 0,50% |
EURORDIS International Initiatives | 25 000 | 0,42% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
ORCHARD THERAPEUTICS | 30 000 | 0,50% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
OVID THERAPEUTICS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
PFIZER | 140 000 | 2,34% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Awareness, Empowerment, and Networking | 85 000 | 1,42% |
Project Development | 10 000 | 0,17% |
PROQR THERAPEUTICS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
PTC THERAPEUTICS | 60 000 | 1,00% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
EURORDIS International Initiatives | 25 000 | 0,42% |
RECORDATI RARE DISEASES | 35 000 | 0,59% |
Black Pearl Awards | 20 000 | 0,33% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
REGENXBIO INC. | 15 000 | 0,25% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
ROCHE | 125 000 | 2,09% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Black Pearl Awards | 25 000 | 0,42% |
EURORDIS International Initiatives | 40 000 | 0,67% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
SANGAMO THERAPEUTICS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
SANIONA | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
SANOFI GENZYME | 160 000 | 2,68% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Rare Barometer | 60 000 | 1,00% |
EURORDIS International Initiatives | 40 000 | 0,67% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
SANTEN PHARMACEUTICAL | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
SAREPTA THERAPEUTICS | 20 000 | 0,33% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
SPARK THERAPEUTICS, INC. | 15 000 | 0,25% |
Rare Impact | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
SWEDISH ORPHAN BIOVITRUM BVBA | 45 000 | 0,75% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
Rare Barometer | 10 000 | 0,17% |
Project Development | 15 000 | 0,25% |
TAKEDA PHARMACEUTICALS INTERNATIONAL AG | 240 000 | 4,02% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
Black Pearl Awards | 25 000 | 0,42% |
Rare Barometer | 60 000 | 1,00% |
EURORDIS International Initiatives | 95 000 | 1,59% |
EURORDIS Membership Meeting | 15 000 | 0,25% |
TAYSHA GENE THERAPIES | 25 000 | 0,42% |
EURORDIS Round Table of Companies | 25 000 | 0,42% |
TRAVERE THERAPEUTICS (ex Retrophin) | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
UCB BIOPHARMA SPRL | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
ULTRAGENYX | 10 000 | 0,17% |
Rare Impact | 10 000 | 0,17% |
VERTEX PHARMACEUTICALS | 80 000 | 1,34% |
Rare Impact | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
EURORDIS International Initiatives | 40 000 | 0,67% |
VIFOR PHARMA GROUP | 20 000 | 0,33% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Black Pearl Awards | 10 000 | 0,17% |
ZAMBON S.P.A. | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
Grand Total | 2 112 000 | 35,19% |
Other Health Sector Companies |
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Company | Amount (€) | % of Revenue |
ALIRA HEALTH SAS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
APARITO | 1 000 | 0,02% |
Open Academy | 1 000 | 0,02% |
BIOAGILYTIX LABS LLC | 4 500 | 0,08% |
Unsolicitated Donation | 4 500 | 0,08% |
BIONICAL EMAS | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
CLINIGEN GROUP | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
HEALX | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
ICON CLINICAL RESEARCH S.A.R.L | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
ILLUMINA CAMBRIDGE LTD. | 31 000 | 0,52% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
Rare Barometer | 21 000 | 0,35% |
IQVIA | 5 000 | 0,08% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
PAREXEL INTERNATIONAL | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
SCIENSUS INTERNATIONAL B.V. | 10 000 | 0,17% |
EURORDIS Round Table of Companies | 10 000 | 0,17% |
VOZ ADVISORS | 15 000 | 0,25% |
EURORDIS Round Table of Companies | 5 000 | 0,08% |
Black Pearl Awards | 10 000 | 0,17% |
Grand Total | 106 500 | 1,78% |
Corporates Outside the Health Sector |
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Company | Amount (€) | % of Revenue |
ANA MERLINO | 2 100 | 0,04% |
Open Academy | 2 100 | 0,04% |
MEDICA TALENT GROUP | 6 000 | 0,10% |
Open Academy | 6 000 | 0,10% |
MAYNARD LEIGH | 4 100 | 0,07% |
Open Academy | 4 100 | 0,07% |
DLA PIPER | 10 328,41 | 0,17% |
Core | 10 328,41 | 0,17% |
Grand Total | 22 528,41 | 0,38% |