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- What is an orphan drug?
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- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
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Financial Information
These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures (Revenue, 6 308 k€ - Expenses 6 175 k€) do not include provisions.
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EURORDIS Expenses 2019
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| Expenses | Amount (€) | Percentage |
|---|---|---|
| Staff | 3 146 198 | 68% |
| Wages and charges | 2 898 112 | 63% |
| Other salaries | 231 883 | 5% |
| Training and other costs | 16 203 | 0% |
| Volunteers | 1 065 373 | 23% |
| Representatives and task forces | 820 511 | 18% |
| Project, office and translators | 244 862 | 5% |
| Logistics | 827 005 | 18% |
| Travels and subsistence | 517 319 | 11% |
| Event logistics and catering | 273 245 | 6% |
| In kind contributions covering travel/accommodation costs for EMA Meetings |
36 441 | 1% |
| Services | 992 460 | 21% |
| Fees | 522 345 | 11% |
| Partners | 15 | 0% |
| Telecom and post | 34 073 | 1% |
| Rent | 327 406 | 7% |
| Other services | 108 622 | 2% |
| Purchase | 125 161 | 3% |
| Office furniture | 33 257 | 1% |
| Amortisation | 37 439 | 1% |
| Communications, Publications | 39 824 | 1% |
| Other purchases | 14 640 | 0% |
| Miscellaneous | 19 256 | 0% |
| Financial expenses, Insurance, Tax | 19 256 | 0% |
| Exceptional expenses | ||
| Sub-total | 6 175 453 | 133% |
| Contingency and loss provisions | 32 376 | 1% |
| Total Expenses | 6 207 829 | |
| Result | 142 575 |
|
EURORDIS Revenue 2019
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| Revenue | Amount (€) | Percentage |
|---|---|---|
| Patient Organisations | 1 034 302 | 22% |
| Financial contributions | 744 300 | 16% |
| - AFM Telethon | 670 000 | 14% |
| - Other Patient Organisations | 74 300 | 2% |
| In kind contributions (AFM) | 210 677 | 4% |
| Membership fees | 79 325 | 2% |
| Individuals | 1 101 723 | 23% |
| Volunteers | 1 065 373 | 22% |
| Donations | 36 350 | 1% |
| European Commission | 1 830 597 | 38% |
| DG Research | 669 533 | 14% |
| DG Health and consumers | 1 141 056 | 24% |
| DG Employment | -16 433 | 0% |
| EMA contributions (*) | 36 441 | 1% |
| National authorities | ||
| Grants from National authorities | ||
| Corporates | 2 006 851 | 42% |
| Pharma. and Biotech Companies | 1 734 000 | 36% |
| Other Health Sector Corporates | 151 426 | 3% |
| Outside Health Sector Corporates | 121 426 | 3% |
| Not for Profit Organisations | 124 382 | 3% |
| Pharma. and Biotech Foundations | ||
| Other Health Sector NPOs | 114 382 | 2% |
| Outside Health Sector NPOs | 10 000 | 0% |
| Event Fees | 125 975 | 3% |
| Miscellaneous | 84 547 | 2% |
| Reimbursements | 67 513 | 1% |
| Others | 17 034 | 0% |
| Sub-total | 6 308 377 | 132% |
| Recovery of provisions | 42 027 | |
| Total Revenue | 6 350 404 |
EURORDIS Corporate Revenue 2019
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Pharmaceutical & Biotechnology Companies |
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|---|---|---|
| Company | Amount (€) | % of Revenue |
| ABLYNX | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ACHILLION | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| ACTELION | 60 000 | 0,94% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| EURORDIS Black Pearl Awards | 35 000 | 0,55% |
| AEGERION | 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 | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ALEXION | 45 000 | 0,70% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| EURORDIS International Initiatives | 25 000 | 0,39% |
| ALNYLAM | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| AMGEN | 25 000 | 0,39% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| AMICUS THERAPEUTICS | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| AUDENTES | 18 000 | 0,28% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Rare Impact | 8 000 | 0,13% |
| AVEXIS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BAYER | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BIOGEN | 35 000 | 0,55% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 25 000 | 0,39% |
| BIOMARIN | 33 000 | 0,52% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| Rare Impact | 8 000 | 0,13% |
| BLUEBIRD BIO | 18 000 | 0,28% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Rare Impact | 8 000 | 0,13% |
| BOEHRINGER INGELHEIM | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BRIDGEBIO | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BRISTOL-MYERS SQUIBB | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| CELGENE | 106 000 | 1,66% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| EURORDIS Membership Meeting | 30 000 | 0,47% |
| EURORDIS International Initiatives | 35 000 | 0,55% |
| Rare Impact | 16 000 | 0,25% |
| CHIESI | 53 000 | 0,83% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| RareConnect® | 10 000 | 0,16% |
| Rare Diseases International | 15 000 | 0,23% |
| Rare Impact | 8 000 | 0,13% |
| CLEMENTIA | 1 250 | 0,02% |
| Cutoff* | 1 250 | 0,02% |
| CSL BEHRING | 75 000 | 1,17% |
| EURORDIS Black Pearl Awards | 20 000 | 0,31% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| EURORDIS International Initiatives | 40 000 | 0,63% |
| CYTOKINETICS | 47 500 | 0,74% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 20 000 | 0,31% |
| EURORDIS Black Pearl Awards | 20 000 | 0,31% |
| Cut-off | -2 500 | -0,04% |
| DIPHARMA | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| DOMPE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| EDITAS | 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% |
| GRIFOLS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| GSK | 70 000 | 1,09% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| RareConnect® | 30 000 | 0,47% |
| Rare Barometer | 30 000 | 0,47% |
| HORIZON | 45 000 | 0,70% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 20 000 | 0,31% |
| RareConnect® | 15 000 | 0,23% |
| INSMED | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| IPSEN | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| KYOWA KIRIN | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Rare Diseases International | 10 000 | 0,16% |
| LEADIANT BIOSCIENCES | 15 000 | 0,23% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| LYSOGENE | 2 000 | 0,03% |
| EURORDIS Round Table of Companies | 2 000 | 0,03% |
| MEREO BIOPHARMA | 2 500 | 0,04% |
| EURORDIS Round Table of Companies | 2 500 | 0,04% |
| MSD EUROPE | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| NOVARTIS | 86 000 | 1,34% |
| EURORDIS Round Table of Companies | 26 000 | 0,39% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| RareConnect® | 15 000 | 0,23% |
| Rare Barometer | 15 000 | 0,23% |
| Rare Impact | 16 000 | 0,25% |
| OP2 DRUGS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ORCHARD THERAPEUTICS | 8 000 | 0,13% |
| Rare Impact | 8 000 | 0,13% |
| ORPHAN EUROPE | 30 000 | 0,47% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| Rare Diseases International | 10 000 | 0,16% |
| OVID THERAPEUTICS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PFIZER | 156 000 | 2,44% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| EURORDIS Membership Meeting | 30 000 | 0,47% |
| EURORDIS International Initiatives | 85 000 | 1,33% |
| Rare Impact | 16 000 | 0,25% |
| PHARMA MAR | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PTC | 33 000 | 0,52% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 15 000 | 0,23% |
| Rare Impact | 8 000 | 0,13% |
| REGENXBIO | 13 000 | 0,20% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Rare Impact | 8 000 | 0,13% |
| ROCHE | 25 000 | 0,39% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| SANGAMO | 13 000 | 0,20% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Rare Impact | 8 000 | 0,13% |
| SANOFI GENZYME | 76 000 | 1,19% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| EURORDIS International Initiatives | 20 000 | 0,31% |
| Rare Impact | 16 000 | 0,25% |
| SANTHERA | 2 500 | 0,04% |
| EURORDIS Round Table of Companies | 2 500 | 0,04% |
| SAREPTA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| SHIRE | 146 000 | 2,28% |
| EURORDIS Round Table of Companies | 25 000 | 0,39% |
| EURORDIS Membership Meeting | 30 000 | 0,47% |
| RareConnect® | 20 000 | 0,31% |
| Rare Barometer | 30 000 | 0,47% |
| Rare Diseases International | 25 000 | 0,39% |
| Rare Impact | 16 000 | 0,25% |
| SOBI | 20 000 | 0,31% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 10 000 | 0,16% |
| SPARK THERAPEUTICS | 13 000 | 0,20% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Rare Impact | 8 000 | 0,13% |
| SYNEOS HEALTH | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| TAKEDA | 67 981 | 1,06% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 15 000 | 0,23% |
| EURORDIS International Initiatives | 42 981 | 0,67% |
| UCB | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ULTRAGENYX | 38 000 | 0,59% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 20 000 | 0,31% |
| Rare Impact | 8 000 | 0,13% |
| Cutoff* | 1 250 | 0,02% |
| VERTEX | 58 000 | 0,91% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| EURORDIS Membership Meeting | 20 000 | 0,31% |
| Rare Diseases International | 20 000 | 0,31% |
| Rare Impact | 8 000 | 0,13% |
| VIFOR PHARMA | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Grand Total | 1 662 981 | 26,01% |
Other Health Sector Companies |
||
| Company | Amount (€) | % of Revenue |
| CLINIGEN | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| CYDAN II, INC. | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| EUROMED-PETRONE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| HAFFNER ASSOCIATES | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| HEALX | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ICON | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ILLUMINA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| MAPI | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| MK&A | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| OPENAPP | 10 000 | 0,16% |
| EURORDIS Black Pearl Awards | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| VITRO SOFTWARE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Grand Total | 70 000 | 1,09% |
Corporates Outside the Health Sector |
||
| Company | Amount (€) | % of Revenue |
| MEDIA PLANET | 21 282 | 0,33% |
| In kind contribution (unrestricted) | 21 282 | 0,33% |
| 4 096 | 0,06% | |
| In kind contribution (unrestricted) | 4 096 | 0,06% |
| FINANCIAL TIMES | 57 803 | 0,90% |
| In kind contribution (unrestricted) | 57 803 | 0,90% |
| PUBLICIS LIFEBRAND | 25 375 | 0,40% |
| In kind contribution (Rare Disease Day) | 25 375 | 0,40% |
| Grand Total | 108 556 | 1,70% |
*Cutoff is the of deferred income and brought forward. For example, in the context of a special event, when a donation is made the year before the event, part of the donation is used to cover some of the preparatory costs of the event and the rest is put aside for the following year.
» 2018 financial independence form.
» EURORDIS Policy on Financial Support by Commercial Companies
EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2019:
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 2019. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies , the Membership Meeting in Bucharest, the EURORDIS Black Pearl Awards , as well as international initiatives such as Rare Disease Day, Rare Barometer , RareConnect™ , 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 countries who made a gift to EURORDIS in 2019.
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 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 2019:
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 2019
- JARC – Joint Action on Rare Cancers
- Rare 2030, Foresight in Rare Disease Policy
- RD-Code project
DG Research and Innovation, for its essential contribution to the following projects:
- The European Joint Programme Rare Diseases (EJP)
- The European Clinical Research Infrastructures Network Integrated Activity (ECRIN-IA) project, which partners with and supports the EURORDIS Summer School
- The Next Generation Health Technology Assessment (HTx)
- The Solve-RD Project -Solving the Unsolved Rare Diseases
- The Innovative Medicines Initiative-Joint Undertaking (IMIJU) project:
- 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
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