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.

Revenue 2019
.
Expenses 2019

EURORDIS Expenses 2019

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Expenses Amount (€) Percentage
Staff 3 146 198 68%
Volunteers 1 065 373 23%
Logistics 827 005 18%
Services 992 460 21%
Purchase 125 161 3%
Miscellaneous 19 256 0%
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%
Individuals 1 101 723 23%
European Commission 1 830 597 38%
National authorities    
Corporates 2 006 851 42%
Not for Profit Organisations 124 382 3%
Event Fees 125 975 3%
Miscellaneous 84 547 2%
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

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 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
Takeda Pfizer
3 4
Novartis Celgene
5
CSL Behring

Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

Abeona Actelion Aegerion Aeglea Agios Akcea Alexion Alnylam AMGEN Amicus Therapeutics Audentes Audentes Avexis AvroBioBayer Schering Pharma AG Biogen Idec Biomarin BlueBird Bio boehringer-ingelheim bridge-bio BMS Chiesi Clementia Clinigen Cydan Cytokinetics Dipharma Dompe Farmaceutici Editas Enzyvant Euromed GileadGrifols Haffner Hansa Horizon Pharma USA Illumina ICONInceptua insmed IpsenKyowa Kirin LEO pharma Lysogene-QMSDOpenApp Orchard OVID Passage BioPublicis Health PTC Therapeutics Recordati RegenXBio Roche Sangamo SanofigenzymeSareptaSOBI SparkUCB Ultragenyx Vertex Vifor VOZZambon

Other corporates

DLA PiperHKMedia Planet

Other contributors (in kind)

Agrenska logoAIPM LogoAIPM LogoImagine Institute logo

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.

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases