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.

Revenue 2018
.
Expenses 2018

EURORDIS Expenses 2018

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Expenses Amount (€) Percentage
Staff 2 853 121 45%
Volunteers 1 308 943 21%
Logistics 1 032 220 16%
Services 936 623 15%
Purchase 120 571 2%
Miscellaneous 32 432 1%
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%
Individuals 1 351 101 21%
European Commission 1 666 814 26%
National authorities 15 900 0%
Corporates 1 841 537 29%
Not for Profit Organisations 117 718 2%
Event Fees 333 829 5%
Miscellaneous 128 294 2%
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%
ACHILLION 20 000 0,31%
ACTELION 60 000 0,94%
AEGERION 5 000 0,08%
AGIOS 5 000 0,08%
AKCEA 10 000 0,16%
ALEXION 45 000 0,70%
ALNYLAM 10 000 0,16%
AMGEN 25 000 0,39%
AMICUS THERAPEUTICS 15 000 0,23%
AUDENTES 18 000 0,28%
AVEXIS 5 000 0,08%
BAYER 5 000 0,08%
BIOGEN 35 000 0,55%
BIOMARIN 33 000 0,52%
BLUEBIRD BIO 18 000 0,28%
BOEHRINGER INGELHEIM 10 000 0,16%
BRIDGEBIO 5 000 0,08%
BRISTOL-MYERS SQUIBB 10 000 0,16%
CELGENE 106 000 1,66%
CHIESI 53 000 0,83%
CLEMENTIA 1 250 0,02%
CSL BEHRING 75 000 1,17%
CYTOKINETICS 47 500 0,74%
DIPHARMA 5 000 0,08%
DOMPE 5 000 0,08%
EDITAS 5 000 0,08%
ENZYVANT 5 000 0,08%
GRIFOLS 5 000 0,08%
GSK 70 000 1,09%
HORIZON 45 000 0,70%
INSMED 5 000 0,08%
IPSEN 10 000 0,16%
KYOWA KIRIN 20 000 0,31%
LEADIANT BIOSCIENCES 15 000 0,23%
LYSOGENE 2 000 0,03%
MEREO BIOPHARMA 2 500 0,04%
MSD EUROPE 10 000 0,16%
NOVARTIS 86 000 1,34%
OP2 DRUGS 5 000 0,08%
ORCHARD THERAPEUTICS 8 000 0,13%
ORPHAN EUROPE 30 000 0,47%
OVID THERAPEUTICS 5 000 0,08%
PFIZER 156 000 2,44%
PHARMA MAR 5 000 0,08%
PTC 33 000 0,52%
REGENXBIO 13 000 0,20%
ROCHE 25 000 0,39%
SANGAMO 13 000 0,20%
SANOFI GENZYME 76 000 1,19%
SANTHERA 2 500 0,04%
SAREPTA 10 000 0,16%
SHIRE 146 000 2,28%
SOBI 20 000 0,31%
SPARK THERAPEUTICS 13 000 0,20%
SYNEOS HEALTH 10 000 0,16%
TAKEDA 67 981 1,06%
UCB 5 000 0,08%
ULTRAGENYX 38 000 0,59%
VERTEX 58 000 0,91%
VIFOR PHARMA 5 000 0,08%
Grand Total 1 662 981 26,01%

Other Health Sector Companies

Company Amount (€) % of Revenue
CLINIGEN 5 000 0,08%
CYDAN II, INC. 5 000 0,08%
EUROMED-PETRONE 5 000 0,08%
HAFFNER ASSOCIATES 10 000 0,16%
HEALX 5 000 0,08%
ICON 5 000 0,08%
ILLUMINA 10 000 0,16%
MAPI 10 000 0,16%
MK&A 5 000 0,08%
OPENAPP 10 000 0,16%
VITRO SOFTWARE 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%
GOOGLE 4 096 0,06%
FINANCIAL TIMES 57 803 0,90%
PUBLICIS LIFEBRAND 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
Pfizer Shire
3 4
Celgene CSL Behring
5
GSK Novartis

Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

Actelion Akcea Ablynx Achillion Aegerion Agios Alexion Alnylam AMGEN Amicus Therapeutics Audentes Avexis Biomarin BlueBird Bio boehringer-ingelheim Bayer Schering Pharma AG Biogen Idec bridge-bio BMS Chiesi Clementia ClinigenCydan Cytokinetics Dipharma Dompe Farmaceutici Editas Enzyvant Euromed Grifols Haffner HealX Horizon Pharma USA ICON Illumina Ipsen inc research insmed Kyowa Kirin Leadiant Lysogene-Q Mereo MK&A MSD OP2 Orphan Europe OpenApp OVID Pharmamar PTC Therapeutics RegenXBio Roche Sangamo Sanofigenzyme Santhera Sarepta Spark SOBI Takeda UCB Ultragenyx Vertex Vifor VitroSoftware

Other corporates

Burson-Marsteller DLA PiperGoogleMedia PlanetPublicis HealthThe Financial Times

Other contributors (in kind)

AIPM LogoAIPM LogoDonau stiftung logo Kindness for Kids

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.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases