- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
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- 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
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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, 6 394 k€ - Expenses 6 284 k€) do not include provisions.
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EURORDIS Expenses 2018
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| Expenses | Amount (€) | Percentage |
|---|---|---|
| Staff | 2 853 121 | 45% |
| Wages and charges | 2 590 889 | 41% |
| Other salaries | 246 030 | 4% |
| Training and other costs | 16 202 | 0% |
| Volunteers | 1 308 943 | 21% |
| Representatives and task forces | 1 099 370 | 17% |
| Project, office and translators | 209 573 | 3% |
| Logistics | 1 032 220 | 16% |
| Travels and subsistence | 541 973 | 9% |
| Event logistics and catering | 444 025 | 7% |
| In kind contributions covering travel/accommodation costs for EMA Meetings |
46 223 | 1% |
| Services | 936 623 | 15% |
| Fees | 480 456 | 8% |
| Partners | ||
| Telecom and post | 39 131 | 1% |
| Rent | 270 823 | 4% |
| Other services | 146 213 | 2% |
| Purchase | 120 571 | 2% |
| Office furniture | 31 938 | 1% |
| Amortisation | 36 923 | 1% |
| Communications, Publications | 37 572 | 1% |
| Other purchases | 14 138 | 0% |
| Miscellaneous | 32 432 | 1% |
| Financial expenses, Insurance, Tax | 32 432 | 1% |
| Exceptional expenses | ||
| Sub-total | 6 283 910 | 100% |
| Contingency and loss provisions | 42 027 | |
| Total Expenses | 6 325 936 | |
| Result | 171 922 |
|
EURORDIS Revenue 2018
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| Revenue | Amount (€) | Percentage |
|---|---|---|
| Patient Organisations | 939 148 | 15% |
| Financial contributions | 683 500 | 11% |
| - AFM Telethon | 634 500 | 10% |
| - Other Patient Organisations | 49 000 | 1% |
| In kind contributions (AFM) | 196 053 | 3% |
| Membership fees | 59 595 | 1% |
| Individuals | 1 351 101 | 21% |
| Volunteers | 1 308 943 | 20% |
| Donations | 42 158 | 1% |
| European Commission | 1 666 814 | 26% |
| DG Research | 292 953 | 5% |
| DG Health and consumers | 1 104 339 | 17% |
| DG Employment | 223 300 | 3% |
| EMA contributions (*) | 46 223 | 1% |
| National authorities | 15 900 | 0% |
| Grants from National authorities | 15 900 | 0% |
| Corporates | 1 841 537 | 29% |
| Pharma. and Biotech Companies | 1 662 981 | 26% |
| Other Health Sector Corporates | 70 000 | 1% |
| Outside Health Sector Corporates | 108 556 | 2% |
| Not for Profit Organisations | 117 718 | 2% |
| Pharma. and Biotech Foundations | ||
| Other Health Sector NPOs | 102 718 | 2% |
| Outside Health Sector NPOs | 15 000 | 0% |
| Event Fees | 333 829 | 5% |
| Miscellaneous | 128 294 | 2% |
| Reimbursements | 112 987 | 2% |
| Others | 15 307 | 0% |
| Sub-total | 6 394 341 | 100% |
| Recovery of provisions | 103 517 | |
| Total Revenue | 6 497 858 |
EURORDIS Corporate Revenue 2018
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Pharmaceutical & Biotechnology Companies |
||
|---|---|---|
| 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 2018:
Health Sector Corporates
Diversification of funding is key to minimising potential conflict of interest with corporates who support us. EURORDIS had 71 different health sector corporate donors in 2018. Companies have supported EURORDIS through the EURORDIS Round Table of Companies , the European Conference for Rare Diseases and Orphan Products Vienna 2018, 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 EURORDIS website 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
EURORDIS would like to thank Luca Dotti for supporting the Remembering Audrey event that took place in London in October. The net proceeds of the event were donated to EURORDIS and Lymphoma Action via Square Rock.
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 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 2018:
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 2018
- RD-ACTION – Rare Diseases Joint Action – Data and policies for Rare Diseases
- JARC – Joint Action on Rare Cancers
DG Research and Innovation, for its essential contribution to the following projects:
- RD-Connect Project to improve connections among different clinical datasets such as registries, biobanks and clinical bioinformatics for rare disease research
- The European Clinical Research Infrastructures Network Integrated Activity (ECRIN-IA) project, which partners with and supports the EURORDIS Summer School
- 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
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)
