- 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, 6 312 k€ - Expenses 6 276 k€) do not include provisions.
.
EURORDIS Expenses 2016
Collapse All
Expand All
| Expenses | Amount (€) | Percentage |
|---|---|---|
| Staff | 2 647 385 | 42% |
| Wages and charges | 2 421 686 | 39% |
| Other salaries | 207 742 | 3% |
| Training and other costs | 17 957 | 0% |
| Volunteers | 1 113 885 | 18% |
| Representatives and task forces | 900 427 | 14% |
| Project, office and translators | 213 458 | 3% |
| Travel and subsistence | 697 905 | 11% |
| Travels | 615 190 | 10% |
| In kind contributions For covering travel/accommodation costs for EMA Meetings |
82 715 | 1% |
| Services | 1 682 567 | 27% |
| Fees | 631 475 | 10% |
| Event logistics and catering | 594 025 | 9% |
| Telecom and post | 33 954 | 1% |
| Rent | 268 126 | 4% |
| Other services | 154 987 | 2% |
| Purchases | 96 300 | 2% |
| Office furniture | 25 264 | 0% |
| Depreciation | 29 136 | 0% |
| Communications, Publications | 29 022 | 0% |
| Other purchases | 12 878 | 0% |
| Miscellaneous | 38 125 | 1% |
| Financial expenses, Insurance, Tax | 38 125 | 1% |
| Sub-total | 6 276 167 | 100% |
| Contingency and loss provisions | 125 434 | 2% |
| Total Expenses | 6 401 601 | |
| Result | -89 417 |
|
EURORDIS Revenue 2016
Collapse All
Expand All
| Revenue | Amount (€) | Percentage |
|---|---|---|
| Patient Organisations | 950 467 | 15% |
| Financial contributions | 689 446 | 11% |
| AFM Telethon | 634 500 | 10% |
| Other Members | 54 946 | 1% |
| In kind contributions (AFM) | 212 746 | 3% |
| Membership fees | 48 275 | 1% |
| Individuals | 1 126 296 | 18% |
| Volunteers | 1 113 885 | 18% |
| Donations | 12 411 | 0% |
| European Commission | 1 768 718 | 28% |
| DG Research | 421 710 | 7% |
| DG Health and food safety | 1 078 738 | 17% |
| DG Employment | 199 985 | 3% |
| EMA contributions (*) | 68 285 | 1% |
| National authorities | 37 268 | 1% |
| Grants from National authorities | 37 268 | 1% |
| Corporates | 1 743 574 | 28% |
| Pharma. and Biotech Companies | 1 443 631 | 23% |
| Other Health Sector Corporates | 90 812 | 1% |
| Outside Health Sector Corporates | 209 131 | 3% |
| Not for Profit Organisations | 137 780 | 2% |
| Pharma. and Biotech Found. | ||
| Other Health Sector NPOs | 132 780 | 2% |
| Outside Health Sector NPOs | 5 000 | 0% |
| Event Fees | 252 316 | 4% |
| Miscellaneous | 295 765 | 5% |
| Reimbursements | 244 732 | 4% |
| Others | 51 033 | 1% |
| Sub-total | 6 312 183 | 100% |
| Total Revenue | 6 312 183 |
EURORDIS Corporate Revenue 2016
Collapse All
Expand All
Pharmaceutical & Biotechnology Companies |
||
|---|---|---|
| Company | Amount (€) | % of Revenue |
| ACHILLION | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ACTELION | 45 000 | 0,71% |
| EURORDIS Awards & Black Pearl Evening | 35 000 | 0,55% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| AKCEA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ALEXION | 20 000 | 0,32% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ALNYLAM | 25 000 | 0,40% |
| EURORDIS Round Table of Companies | 25 000 | 0,40% |
| AMGEN | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| AMICUS THERAPEUTICS | 15 000 | 0,24% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ARIAD | 4 615 | 0,07% |
| Cut off* | 4 615 | 0,07% |
| ASTRAZENECA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| AUDENTES | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BAXALTA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BAYER | 40 000 | 0,63% |
| EURORDIS Awards & Black Pearl Evening | 35 000 | 0,55% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| BIOGEN | 50 623 | 0,80% |
| EURORDIS Awards & Black Pearl Evening | 25 000 | 0,40% |
| Rare Diseases International | 15 623 | 0,25% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BIOMARIN | 50 000 | 0,79% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| ERTC Symposium | 5 000 | 0,08% |
| EURORDIS Awards & Black Pearl Evening | 25 000 | 0,40% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BLUEBIRD BIO | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BOEHRINGER INGELHEIM | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| BRISTOL-MYERS SQUIBB | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| CELGENE | 85 000 | 1,35% |
| ERTC Symposium | 5 000 | 0,08% |
| EURORDIS International Initiatives | 30 000 | 0,48% |
| EURORDIS Awards & Black Pearl Evening | 25 000 | 0,40% |
| EURORDIS Round Table of Companies | 25 000 | 0,40% |
| CHIESI | 40 000 | 0,63% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| RareConnect® | 15 000 | 0,24% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| CLEMENTIA | 10 000 | 0,16% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| CSL BEHRING | 70 538 | 1,12% |
| EURORDIS Membership Meeting | 15 000 | 0,24% |
| ERTC Symposium | 20 000 | 0,32% |
| EURORDIS Awards & Black Pearl Evening | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Cut off* | 5 538 | 0,09% |
| CYTOKINETICS | 30 000 | 0,48% |
| EURORDIS Awards & Black Pearl Evening | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| DOMPE | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| EUSA PHARMA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| GENZYME | 55 000 | 0,87% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| Rare Diseases International | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 25 000 | 0,40% |
| GRIFOLS | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| GSK | 70 000 | 1,11% |
| Rare Barometer | 35 000 | 0,55% |
| RareConnect® | 35 000 | 0,55% |
| HORIZON | 34 000 | 0,54% |
| EURORDIS Awards & Black Pearl Evening | 15 000 | 0,24% |
| EURORDIS Awards & Black Pearl Evening | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Cut off* | -6 000 | -0,10% |
| INCYTE | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| INSMED | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| INTERCEPT | 2 000 | 0,03% |
| Miscellaneous | 2 000 | 0,03% |
| IPSEN | 15 000 | 0,24% |
| EURORDIS Membership Meeting | 15 000 | 0,24% |
| KYOWA KIRIN | 15 000 | 0,24% |
| EURORDIS Membership Meeting | 15 000 | 0,24% |
| LFB BIOMEDICAMENTS | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| LYSOGENE | 2 000 | 0,03% |
| EURORDIS Round Table of Companies | 2 000 | 0,03% |
| MERCK | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| NOVARTIS | 79 167 | 1,25% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| RareConnect® | 20 000 | 0,32% |
| Rare Diseases International | 39 167 | 0,62% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ORPHAN EUROPE | 30 000 | 0,48% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| OVID | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PFIZER | 107 000 | 1,70% |
| EURORDIS Membership Meeting | 25 000 | 0,40% |
| ERTC Symposium | 40 000 | 0,63% |
| EURORDIS International Initiatives | 42 000 | 0,67% |
| PHARMA MAR | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| PTC | 35 000 | 0,55% |
| EURORDIS Awards & Black Pearl Evening | 25 000 | 0,40% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| RAPTOR | 45 000 | 0,71% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| RareConnect® | 15 000 | 0,24% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| ROCHE | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| SANTHERA | 15 000 | 0,24% |
| EURORDIS Awards & Black Pearl Evening | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| SHIRE | 120 000 | 1,90% |
| EURORDIS Membership Meeting | 25 000 | 0,40% |
| EURORDIS Awards & Black Pearl Evening | 50 000 | 0,79% |
| Rare Diseases International | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 25 000 | 0,40% |
| SIGMA-TAU | 16 615 | 0,26% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| Cut off* | 1 615 | 0,03% |
| SOBI | 30 000 | 0,48% |
| EURORDIS Membership Meeting | 10 000 | 0,16% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| SPARK THERAPEUTICS | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| TAKEDA | 37 841 | 0,60% |
| Rare Barometer | 32 841 | 0,52% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| UCB | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| ULTRAGENYX | 19 231 | 0,30% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Cut off* | 9 231 | 0,15% |
| VANDA | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| VERTEX | 45 000 | 0,71% |
| Rare Barometer | 15 000 | 0,24% |
| Rare Diseases International | 20 000 | 0,32% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Subtotal Pharmaceutical & Biotechnology Companies | 1 443 631 | 22,87% |
Other Health Sector Companies |
||
| Company | Amount (€) | % of Revenue |
| CYDAN | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| IDIS-CLINIGEN | 15 000 | 0,24% |
| EURORDIS Awards & Black Pearl Evening | 10 000 | 0,16% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| MAPI | 37 812 | 0,60% |
| EURORDIS Round Table of Companies | 10 000 | 0,16% |
| Rare Barometer | 27 812 | 0,44% |
| MARK KRUEGER AND ASSOCIATES | 3 000 | 0,05% |
| EURORDIS Awards & Black Pearl Evening | 3 000 | 0,05% |
| OPENAPP | 5 000 | 0,08% |
| EURORDIS Round Table of Companies | 5 000 | 0,08% |
| QUINTILES | 25 000 | 0,40% |
| EURORDIS Round Table of Companies | 25 000 | 0,40% |
| Total | 90 812 | 1,44% |
Corporates Outside the Health Sector |
||
| Company | Amount (€) | % of Revenue |
| ARES LIFE SCIENCES | 8 000,00 | 0,13% |
| EURORDIS Awards & Black Pearl Evening | 8 000,00 | 0,13% |
| BURSON MARSTELLER | 3 747,00 | 0,06% |
| Rare Disease Day (in kind) | 3 747,00 | 0,06% |
| DLA PIPER | 44 781,94 | 0,71% |
| Rare Disease Day (in kind) | 44 781,94 | 0,71% |
| 109 185,00 | 1,73% | |
| RareConnect® (in kind) | 109 185,00 | 1,73% |
| INDIVIDUAL VOLUNTEER TRANSLATORS | 157,68 | 0,00% |
| RareConnect® (in kind) | 157,68 | 0,00% |
| INTERACTIUS | 4 480,00 | 0,07% |
| RareConnect® (in kind) | 4 480,00 | 0,07% |
| MEDIA PLANET | 5 650,15 | 0,09% |
| Rare Disease Day (in kind) | 5 650,15 | 0,09% |
| MULTIBURO | 10 512,00 | 0,17% |
| Office Space in Brussels (in kind) | 10 512,00 | 0,17% |
| PUBLICIS LIFEBRAND | 11 700,00 | 0,19% |
| Rare Disease Day (in kind) | 11 700,00 | 0,19% |
| REDMOND CONSULTING | 2 936,35 | 0,05% |
| Communications (in kind) | 2 936,35 | 0,05% |
| TRANSLATORS WITHOUT BORDERS | 2 733,00 | 0,04% |
| RareConnect® (in kind) | 2 733,00 | 0,04% |
| TROMMONS | 5 247,04 | 0,08% |
| RareConnect® (in kind) | 5 247,04 | 0,08% |
| Total | 209 130,16 | 3,31% |
*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. » 2016 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 2016:
Health Sector Corporates
Diversification of funding is a key success factor to minimise potential conflict of interest with donors. EURORDIS has diversified its pharmaceutical and biotechnology sector companies’ sponsorship from 51 to 53 different companies in 2016. 6 health sector companies also contributed to the 2016 incomes. Companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European Conference on Rare Diseases Edinburgh 2016, the Multi-Stakeholder Symposium, the EURORDIS Black Pearl Evening, as well as international initiatives such as Rare Barometer, RareConnect™ and Rare Diseases International. 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.
3.
4.
5. 
5.
Other Pharmaceutical Companies & Health Sector Corporates
In-kind contributors
Other contributors
AIPM
Association of International Pharmaceutical Manufacturers
ARES
Arès Life Sciences
EFPIA
European Federation of Pharmaceutical Industries and Associations
EveryLife Foundation for Rare Diseases
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 2016 (PDF 1,3 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 2016:
AFM Téléthon
The “Association Française contre les Myopathies”, for the annual core activities grant, the office space they make available to the organisation free of charge and their in-kind production of the Rare Disease Day 2017 video.
European Commission
DG Health and Food Safety, for its essential contribution to the following projects:
- The Operating Grant for year 2016
- 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
- RARE-Bestpractices – A platform for sharing best practices for the management of rare diseases
- Genetics Clinic of the Future – A stepping stone approach towards the Genetics Clinic of the Future
- COST – European Cooperation in Science and Technology
- The Innovative Medicines Initiative-Joint Undertaking (IMI-JU) projects:
- 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
VisitScotland - Marketing Edinburgh Ltd
- European Conference on Rare Diseases 2016
We comply with the HONcode standard for health trustworthy information
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)
