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- 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, 5 594 k€ - Expenses 5 384 k€) do not include provisions.
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EURORDIS Expenses 2017
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| Expenses | Amount (€) | Percentage |
|---|---|---|
| Staff | 2 679 121 | 50% |
| Wages and charges | 2 462 084 | 46% |
| Other salaries | 202 612 | 4% |
| Training and other costs | 14 425 | 0% |
| Volunteers | 1 027 105 | 19% |
| Representatives and task forces | 824 521 | 15% |
| Project, office and translators | 202 584 | 4% |
| Logistics | 803 912 | 15% |
| Travels and subsistence | 437 860 | 8% |
| Event logistics and catering | 300 305 | 6% |
| In kind contributions covering travel/accommodation costs for EMA Meetings |
65 747 | 1% |
| Services | 752 538 | 14% |
| Fees | 342 468 | 6% |
| Telecom and post | 30 342 | 1% |
| Rent | 251 265 | 5% |
| Other services | 128 463 | 2% |
| Purchase | 104 751 | 2% |
| Office furniture | 26 509 | 0% |
| Amortisation | 32 998 | 1% |
| Communications, Publications | 34 536 | 1% |
| Other purchases | 10 709 | 0% |
| Miscellaneous | 17 034 | 0% |
| Financial expenses, Insurance, Tax | 17 034 | 0% |
| Sub-total | 5 384 461 | 100% |
| Contingency and loss provisions | 57 898 | 1% |
| Total Expenses | 5 442 359 | |
| Result | 175 854 |
|
EURORDIS Revenue 2017
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| Revenue | Amount (€) | Percentage |
|---|---|---|
| Patient Organisations | 882 796 | 16% |
| Financial contributions | 654 500 | 12% |
| - AFM Telethon | 634 500 | 11% |
| - Other Patient Organisations | 20 000 | 0% |
| In kind contributions (AFM) | 172 746 | 3% |
| Membership fees | 55 550 | 1% |
| Individuals | 1 038 157 | 19% |
| Volunteers | 1 027 105 | 18% |
| Donations | 11 052 | 0% |
| European Commission | 1 392 730 | 25% |
| DG Research | 171 674 | 3% |
| DG Health and consumers | 916 035 | 16% |
| DG Employment | 239 273 | 4% |
| EMA contributions (*) | 65 747 | 1% |
| Corporates | 1 788 093 | 32% |
| Pharma. and Biotech Companies | 1 596 758 | 29% |
| Other Health Sector Corporates | 91 147 | 2% |
| Outside Health Sector Corporates | 100 188 | 2% |
| Not for Profit Organisations | 25 000 | 0% |
| Other Health Sector NPOs | 20 000 | 0% |
| Outside Health Sector NPOs | 5 000 | 0% |
| Event Fees | 112 721 | 2% |
| Miscellaneous | 354 367 | 6% |
| Reimbursements | 322 569 | 6% |
| Others | 31 798 | 1% |
| Sub-total | 5 593 863 | 100% |
| Recovery of provisions | 24 350 | |
| Total Revenue | 5 618 213 |
EURORDIS Corporate Revenue 2017
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Pharmaceutical & Biotechnology Companies |
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|---|---|---|
| Company | Amount (€) | % of Revenue |
| ABLYNX | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| ACHILLION | 26 000 | 0,46% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| RareConnect® | 8 000 | 0,14% |
| Rare Diseases International | 8 000 | 0,14% |
| ACTELION | 45 000 | 0,80% |
| EURORDIS Black Pearl Awards | 35 000 | 0,63% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| AEGERION | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| AGIOS | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| AKCEA | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| ALEXION | 25 000 | 0,45% |
| EURORDIS Membership Meeting | 15 000 | 0,27% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| ALNYLAM | 35 000 | 0,63% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| AMGEN | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| AMICUS THERAPEUTICS | 15 000 | 0,27% |
| EURORDIS Black Pearl Awards | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| ASTRAZENECA | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| AUDENTES | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| AVEXIS | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| BAYER | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| BIOGEN | 52 862 | 0,94% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| EURORDIS Black Pearl Awards | 25 000 | 0,45% |
| Rare Diseases International | 17 862 | 0,32% |
| BIOMARIN | 30 000 | 0,54% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| Multistakeholders Symposium | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| BLUEBIRD BIO | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| BOEHRINGER INGELHEIM | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| BRISTOL-MYERS SQUIBB | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| CELGENE | 100 000 | 1,79% |
| Multistakeholders Symposium | 25 000 | 0,45% |
| EURORDIS International Initiatives | 35 000 | 0,63% |
| EURORDIS Membership Meeting | 15 000 | 0,27% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| CHIESI | 40 000 | 0,72% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| EURORDIS Black Pearl Awards | 10 000 | 0,18% |
| RareConnect® | 15 000 | 0,27% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| CLEMENTIA | 18 750 | 0,34% |
| EURORDIS Black Pearl Awards | 20 000 | 0,36% |
| Cutoff* | -1 250 | -0,02% |
| CSL BEHRING | 78 500 | 1,40% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| EURORDIS International Initiatives | 20 000 | 0,36% |
| EURORDIS Black Pearl Awards | 20 000 | 0,36% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| Cutoff* | 3 500 | 0,06% |
| CYTOKINETICS | 30 000 | 0,54% |
| EURORDIS Black Pearl Awards | 20 000 | 0,36% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| DOMPE | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| EDITAS | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| ENZYVANT | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| GRIFOLS | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| GSK | 70 000 | 1,25% |
| Rare Barometer | 35 000 | 0,63% |
| RareConnect® | 35 000 | 0,63% |
| HELSINN | 15 000 | 0,27% |
| Rare Cancers Joint Action | 15 000 | 0,27% |
| HORIZON | 31 000 | 0,55% |
| RareConnect® | 15 000 | 0,27% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| Cutoff* | 6 000 | 0,11% |
| ICON | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| INCYTE | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| INSMED | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| IPSEN | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| JAZZ PHARMA | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| KYOWA KIRIN | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| LEADIANT BIOSCIENCES | 8 000 | 0,14% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| Cutoff* | 3 000 | 0,05% |
| LFB BIOMEDICAMENTS | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| LYSOGENE | 2 000 | 0,04% |
| EURORDIS Round Table of Companies | 2 000 | 0,04% |
| MSD EUROPE | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| NOVARTIS | 80 000 | 1,43% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| RareConnect® | 20 000 | 0,36% |
| Rare Diseases International | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| Rare Barometer | 15 000 | 0,27% |
| ORPHAN EUROPE | 30 000 | 0,54% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| EURORDIS Black Pearl Awards | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| OVID THERAPEUTICS | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| PFIZER | 130 000 | 2,32% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| EURORDIS Membership Meeting | 15 000 | 0,27% |
| Multistakeholders Symposium | 40 000 | 0,72% |
| EURORDIS International Initiatives | 50 000 | 0,89% |
| PHARMA MAR | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| PROMETIC LIFE SCIENCES | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| PTC | 35 000 | 0,63% |
| EURORDIS Black Pearl Awards | 25 000 | 0,45% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| REGENXBIO | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| ROCHE | 45 000 | 0,80% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| EURORDIS Black Pearl Awards | 20 000 | 0,36% |
| SANGAMO | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| SANOFI GENZYME | 60 000 | 1,07% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| EURORDIS Membership Meeting | 15 000 | 0,27% |
| Rare Diseases International | 20 000 | 0,36% |
| SANTHERA | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| SHIRE | 130 000 | 2,32% |
| EURORDIS Black Pearl Awards | 50 000 | 0,89% |
| International activities | 55 000 | 0,98% |
| EURORDIS Round Table of Companies | 25 000 | 0,54% |
| SOBI | 30 000 | 0,54% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| EURORDIS Black Pearl Awards | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| SPARK THERAPEUTICS | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| STALLERGENES GREER | 8 000 | 0,14% |
| EURORDIS Black Pearl Awards | 8 000 | 0,14% |
| SYNEOS HEALTH | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| TAKEDA | 42 896 | 0,77% |
| EURORDIS International Initiatives | 32 896 | 0,59% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| UCB | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| ULTRAGENYX | 28 750 | 0,51% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| EURORDIS Black Pearl Awards | 25 000 | 0,45% |
| Cutoff* | -1 250 | -0,02% |
| VERTEX | 90 000 | 1,61% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| EURORDIS Membership Meeting | 10 000 | 0,18% |
| Rare Barometer | 50 000 | 0,89% |
| Rare Diseases International | 20 000 | 0,36% |
| VIFOR PHARMA | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| WAVE LIFE SCIENCES | 10 000 | 0,18% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| Grand Total | 1 591 758 | 28,46% |
Other Health Sector Companies |
||
| Company | Amount (€) | % of Revenue |
| CYDAN II | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| CLINIGEN | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| MAPI | 28 147 | 0,50% |
| EURORDIS Round Table of Companies | 10 000 | 0,18% |
| Rare Barometer | 18 147 | 0,32% |
| INCEPUA | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| OPENAPP | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| QuintilesIMS-IQVIA | 25 000 | 0,45% |
| EURORDIS Round Table of Companies | 25 000 | 0,45% |
| VITRO SOFTWARE | 5 000 | 0,09% |
| EURORDIS Round Table of Companies | 5 000 | 0,09% |
| CLINIGEN | 10 000 | 0,18% |
| EURORDIS Black Pearl Awards | 10 000 | 0,18% |
| MK&A | 3 000 | 0,05% |
| EURORDIS Black Pearl Awards | 3 000 | 0,05% |
| Total | 100 189 | 1,79% |
Corporates Outside the Health Sector |
||
| Company | Amount (€) | % of Revenue |
| MICROSOFT | 15 000 | 0,27% |
| Data management initiatives | 15 000 | 0,27% |
| BURSON MARSTELLER | 5 000 | 0,09% |
| Core activities | 5 000 | 0,09% |
| DLA PIPER | 6 500 | 0,12% |
| Core activities | 6 500 | 0,12% |
| MEDIA PLANET | 14 225 | 0,25% |
| Core activities | 14 225 | 0,25% |
| 5 963 | 0,11% | |
| Core activities | 5 963 | 0,11% |
| PUBLICIS LIFEBRAND | 35 760 | 0,64% |
| Rare Disease Day | 35 760 | 0,64% |
| REFLEX MEDIA | 11 175 | 0,20% |
| Core activities | 11 175 | 0,20% |
| TRANSLATORS WITHOUT BORDERS | 3 048 | 0,04% |
| RareConnect® | 3 048 | 0,05% |
| TROMMONS | 3 048 | 0,05% |
| RareConnect® | 3 048 | 0,05% |
| MISCELLANEOUS | 439 | 0,01% |
| Core activities | 439 | 0,01% |
| Total | 100 189 | 1,79% |
*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.
» 2017 financial independence form.
» EURORDIS Policy on Financial Support by Commercial Companies
In addition to the organisations accredited (on the right-hand side), EURORDIS gratefully acknowledges the generous support of the following contributors in 2017:
Health Sector Corporates
Diversification of funding is key to minimising potential conflict of interest with donors. EURORDIS has diversified its pharmaceutical and biotechnology sector contributors from 53 to 64 different companies in 2017. Eight other health sector companies also contributed to the 2017 incomes. Companies have supported EURORDIS through the EURORDIS Round Table of Companies , the EURORDIS Membership Meeting Budapest 2017, the Multi-Stakeholder Symposium, the EURORDIS Black Pearl Awards , as well as international initiatives such as Rare Disease Day, Rare Barometer , RareConnect™ , Rare Diseases International and the co-funding of DG SANTE Joint Action of Rare Cancers. 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. |
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3. |
4. |
5. |
Other Pharmaceutical Companies & Health Sector Corporates
Outside Health Sector Corporates
Non profit organisations
AIPM
Association of International Pharmaceutical Manufacturers
Kindness for Kids
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 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 2017:
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 2017
- 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
- Genetics Clinic of the Future – A stepping stone approach towards the Genetics Clinic of the Future
- The Innovative Medicines Initiative-Joint Undertaking (IMIJU) project:
- ADAPT SMART - Accelerated Development of Appropriate Patient Therapies - a Sustainable, Multistakeholder Approach from Research to Treatment outcomes
- European Patients’ Academy on Therapeutic Innovation (EUPATI)
- Web-Radr - Recognising Adverse Drug Reactions
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)
