- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
Financial Information
These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures (Revenue, 6 509 k€ - Expenses 6 162 k€) do not include provisions.
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EURORDIS Expenses 2020
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| Expenses | Amount (€) | Percentage |
|---|---|---|
| Staff | 3 463 090 | 56% |
| Wages and charges | 3 267 267 | 53% |
| Other salaries | 151 983 | 2% |
| Training and other costs | 43 841 | 1% |
| Volunteers | 938 141 | 15% |
| Representatives and task forces | 711 460 | 12% |
| Project, office and translators | 226 681 | 4% |
| Logistics | 524 794 | 9% |
| Travels and subsistence | 154 222 | 3% |
| Event logistics and catering | 82 870 | 1% |
| Virtual events | 279 298 | 5% |
| In kind contributions covering travel/accommodation costs for EMA Meetings |
8 404 | 0% |
| Services | 1 006 938 | 16% |
| Fees | 553 899 | 9% |
| Telecom and post | 37 774 | 1% |
| Rent | 298 927 | 5% |
| Other services | 116 338 | 2% |
| Purchase | 96 432 | 2% |
| Office furniture | 29 097 | 0% |
| Amortisation | 35 700 | 1% |
| Communications, Publications | 18 300 | 0% |
| Other purchases | 13 334 | 0% |
| Miscellaneous | 132 386 | 2% |
| Financial expenses, Insurance, Tax | 29 463 | 0% |
| Exceptional expenses | 102 923 | 2% |
| Sub-total | 6 161 781 | 100% |
| Contingency and loss provisions | 124 282 | 2% |
| Total Expenses | 6 286 063 | |
| Result | 223 033 |
|
EURORDIS Revenue 2020
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| Revenue | Amount (€) | Percentage |
|---|---|---|
| Patient Organisations | 994 846 | 15% |
| Financial contributions | 680 190 | 10% |
| - AFM Telethon | 670 000 | 10% |
| - Other Patient Organisations | 10 190 | 0% |
| In kind contributions (AFM) | 223 016 | 3% |
| Membership fees | 91 640 | 1% |
| Individuals | 944 954 | 15% |
| Volunteers | 938 141 | 14% |
| Donations | 6 813 | 0% |
| European Commission | 1 971 122 | 30% |
| DG Research | 651 397 | 10% |
| DG Health and consumers | 1 311 321 | 20% |
| DG Employment | ||
| EMA contributions (*) | 8 404 | 0% |
| Corporates | 2 043 007 | 31% |
| Pharma. and Biotech Companies | 1 859 360 | 29% |
| Other Health Sector Corporates | 107 900 | 2% |
| Outside Health Sector Corporates | 75 747 | 1% |
| Not for Profit Organisations | 282 710 | 4% |
| Pharma. and Biotech Foundations | 12 954 | 0% |
| Other Health Sector NPOs | 67 834 | 1% |
| Outside Health Sector NPOs | 201 922 | 3% |
| Event Fees | 249 888 | 4% |
| Miscellaneous | 22 568 | 0% |
| Reimbursements | 8 153 | 0% |
| Others | 14 415 | 0% |
| Sub-total | 6 509 096 | 100% |
| Recovery of provisions | ||
| Total Revenue | 6 509 096 |
EURORDIS Corporate Revenue 2020
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Pharmaceutical & Biotechnology Companies |
||
|---|---|---|
| Company | Amount (€) | % of Revenue |
| ABEONA THERAPEUTICS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| AEGLEA BIOTHERAPEUTICS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| AGIOS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| AKCEA THERAPEUTICS | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| ALEXION | 75 000 | 1,15% |
| EURORDIS Black Pearl Awards | 10 000 | 0,15% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 25 000 | 0,38% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| ALLIEVEX | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ALNYLAM | 20 000 | 0,31% |
| Black Pearl Awards | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| AMGEN EUROPE | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| AMICUS THERAPEUTICS | 20 000 | 0,31% |
| Rare Barometer Voices | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| AMRYT | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ARGENX | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| ASTELLAS | 14 000 | 0,22% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| AVROBIO | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BAYER | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BIOGEN | 55 000 | 0,84% |
| Black Pearl Awards | 25 000 | 0,38% |
| European Conference on Rare Diseases | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BIOMARIN | 29 000 | 0,45% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BLUEBIRD BIO | 14 000 | 0,22% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BLUEPRINT MEDICINES | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BOEHRINGER INGELHEIM | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| BRIDGEBIO | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BRISTOL-MYERS SQUIBB | 108 000 | 1,66% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 40 000 | 0,61% |
| Rare Barometer Voices | 20 000 | 0,31% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| CHIESI | 74 000 | 1,14% |
| Black Pearl Awards | 10 000 | 0,15% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 35 000 | 0,54% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| CSL BEHRING | 75 000 | 1,15% |
| Black Pearl Awards | 20 000 | 0,31% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| Rare Barometer Voices | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| CYTOKINETICS | 30 000 | 0,46% |
| Black Pearl Awards | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| DICERNA | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ENZYVANT | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| GILEAD | 18 000 | 0,28% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| GLOBAL BLOOD THERAPEUTICS | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| GRIFOLS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| LUNDBECK | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| HANSA BIOPHARMA | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| HORIZON THERAPEUTICS | 55 000 | 0,84% |
| Black Pearl Awards | 20 000 | 0,31% |
| EURORDIS International Initiatives | 25 000 | 0,38% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| INSMED | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| IPSEN | 30 000 | 0,46% |
| European Conference on Rare Diseases | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| JANSSEN, a pharmaceutical company of J&J | 75 000 | 1,15% |
| Black Pearl Awards | 35 000 | 0,54% |
| Rare Barometer Voices | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| JAZZ PHARMACEUTICALS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| KYOWA KIRIN | 48 588 | 0,75% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| Unrestricted | 3 588 | 0,06% |
| LEO PHARMA | 20 000 | 0,31% |
| Rare Barometer Voices | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| LYSOGENE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| MSD | 10 000 | 0,15% |
| Round Table of Companies | 10 000 | 0,15% |
| NEUROGENE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| NOVARTIS | 73 000 | 1,12% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 25 000 | 0,38% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| NOVARTIS GENE THERAPIES | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ORCHARD THERAPEUTICS | 24 000 | 0,37% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| OVID THERAPEUTICS | 15 000 | 0,23% |
| EURORDIS Black Pearl Awards | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PASSAGE BIO | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PFIZER | 148 000 | 2,27% |
| European Conference on Rare Diseases | 30 000 | 0,46% |
| EURORDIS International Initiatives | 65 000 | 1,00% |
| EURORDIS International Initiatives | 20 000 | 0,31% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| PROQR | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| PTC THERAPEUTICS | 54 000 | 0,83% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 25 000 | 0,38% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| RECORDATI RARE DISEASES | 35 000 | 0,54% |
| Black Pearl Awards | 10 000 | 0,15% |
| EURORDIS International Initiatives | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| REGENXBIO | 9 000 | 0,14% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ROCHE | 120 000 | 1,84% |
| Black Pearl Awards | 25 000 | 0,38% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 40 000 | 0,61% |
| Project Development | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| SANGAMO | 9 000 | 0,14% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| SANOFI GENZYME | 95 000 | 1,46% |
| Unrestricted | 7 000 | 0,11% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS International Initiatives | 40 000 | 0,61% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| SAREPTA THERAPEUTICS | 14 000 | 0,22% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| SOBI | 30 000 | 0,46% |
| Black Pearl Awards | 10 000 | 0,15% |
| Project Development | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| SPARK THERAPEUTICS | 9 000 | 0,14% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| TAKEDA | 188 000 | 2,89% |
| European Conference on Rare Diseases | 30 000 | 0,46% |
| EURORDIS International Initiatives | 85 000 | 1,31% |
| Rare Barometer Voices | 40 000 | 0,61% |
| Rare Impact | 8 000 | 0,12% |
| EURORDIS Round Table of Companies | 25 000 | 0,38% |
| TRAVERE THERAPEUTICS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| UCB | 27 772 | 0,42% |
| Unrestricted | 2 772 | 0,04% |
| European Conference on Rare Diseases | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| ULTRAGENYX | 4 000 | 0,06% |
| Rare Impact | 4 000 | 0,06% |
| VERTEX | 34 000 | 0,52% |
| European Conference on Rare Diseases | 20 000 | 0,31% |
| Rare Impact | 4 000 | 0,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| VIFOR PHARMA | 15 000 | 0,23% |
| Black Pearl Awards | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ZAMBON | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Grand Total | 1 859 360 | 28,57% |
Other Health Sector Companies |
||
| Company | Amount (€) | % of Revenue |
| ALIRA HEALTH | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| APARITO | 1 200 | 0,02% |
| Open Academy | 1 200 | 0,02% |
| CLINIGEN | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| CYDAN | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| DRAVET SYNDROME FOUNDATION | 1 400 | 0,02% |
| Open Academy | 1 400 | 0,02% |
| HEALX | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ICON | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| ILLUMINA | 30 000 | 0,46% |
| Rare Barometer Voices | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| IQVIA | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| MAYO CLINIC | 4 500 | 0,07% |
| Open Academy | 4 500 | 0,07% |
| MEDICA TALENT GROUP | 8 000 | 0,12% |
| Open Academy | 8 000 | 0,12% |
| PAREXEL | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 10 000 | 0,15% |
| QUALITY IMPROVEMENT CLINIC | 2 800 | 0,04% |
| Open Academy | 2 800 | 0,04% |
| VOZ ADVISORS | 15 000 | 0,23% |
| Black Pearl Awards | 10 000 | 0,15% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Grand Total | 107 900 | 1,66% |
Corporates Outside the Health Sector |
||
| Company | Amount (€) | % of Revenue |
| ANA MERLINO | 4 100 | 0,06% |
| Open Academy | 4 100 | 0,06% |
| CAPGEMINI | 1 000 | 0,02% |
| Open Academy | 1 000 | 0,02% |
| DLA PIPER | 50 891 | 0,78% |
| Miscellaneous | 50 891 | 0,78% |
| LAWYER GILLIAN AUSTIN | 443 | 0,01% |
| Miscellaneous | 443 | 0,01% |
| MAYNARD LEIGH | 4 113 | 0,06% |
| Open Academy | 4 113 | 0,06% |
| SHAPE HISTORY | 13 000 | 0,20% |
| Rare Disease Day | 13 000 | 0,20% |
| SWW INTERCULTURAL TRAINING | 2 200 | 0,03% |
| Open Academy | 2 200 | 0,03% |
| Grand Total | 75 748 | 1,16% |
EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2020:
Health Sector Corporates
EURORDIS appreciates the donations received from health sector companies and other private funders. Ensuring a sustained variety of funding is key to minimise potential conflicts of interest. EURORDIS had 70 different health sector corporate donors in 2020. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European Conference for Rare Diseases and Orphan Products (ECRD) online, the EURORDIS Black Pearl Awards, as well as international initiatives such as Rare Disease Day, Rare Barometer, Rare Diseases International, EURORDIS Open Academy, NGO Committee for Rare Diseases, and multi-lingual communications. The breakdown of each company’s donations by project is detailed on the “Corporate revenue” tab of the “Financial Information” section.
Top five donors
| 1 | 2 |
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| 3 | 4 |
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| 5 | |
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Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates
Other corporates
Other contributors (in kind)
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 2020.
Methodology
Reporting in-kind
contributions in financial reports of
patient organizations
(PDF 2 M)
In-kind contributions in financial reports of patient organizations: Q&A (PDF 0,8 M)
Financial reports
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)
Acknowledgements
EURORDIS would like to thank the following organisations for their highly valued support in 2020:
AFM Téléthon
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.
European Commission
DG Health and Food Safety, for its essential contribution to the following grants:
- The Operating Grant for year 2020
- Rare 2030, Foresight in Rare Diseases Policy
- RD-Code project
DG Research and Innovation, for its essential contribution to the following projects:
- The European Joint Programme Rare Diseases (EJP)
- The Next Generation Health Technology Assessment (HTx)
- The Solve-RD Project -Solving the Unsolved Rare Diseases
- The Innovative Medicines Initiative-Joint Undertaking (IMIJU) projects:
- PARADIGM, Patients Active in Research and Dialogues for an Improved Generation of Medicines: Advancing meaningful patient engagement in the life cycle of medicines for better health outcomes
- conect4children, a Collaborative Network for European Clinical Trials For Children
Employment and Social Innovation (EaSI) Programme, for its essential contribution to the following project:
- INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) project to develop and test an innovative patient-centred approach for social care provision to complex conditions
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We are grateful for the financial support of the EURORDIS website by:
This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
