Financial Information

These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures (Revenue, 6 509 k€ - Expenses 6 162 k€) do not include provisions.

Revenue 2020
.
Expenses 2020

EURORDIS Expenses 2020

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Expenses Amount (€) Percentage
Staff 3 463 090 56%
Volunteers 938 141 15%
Logistics 524 794 9%
Services 1 006 938 16%
Purchase 96 432 2%
Miscellaneous 132 386 2%
Sub-total 6 161 781 100%
Contingency and loss provisions 124 282 2%
Total Expenses 6 286 063  
Result 223 033

 

EURORDIS Revenue 2020

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Revenue Amount (€) Percentage
Patient Organisations 994 846 15%
Individuals 944 954 15%
European Commission 1 971 122 30%
Corporates 2 043 007 31%
Not for Profit Organisations 282 710 4%
Event Fees 249 888 4%
Miscellaneous 22 568 0%
Sub-total 6 509 096 100%
Recovery of provisions    
Total Revenue 6 509 096  

EURORDIS Corporate Revenue 2020

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Pharmaceutical & Biotechnology Companies

Company Amount (€) % of Revenue
ABEONA THERAPEUTICS 5 000 0,08%
AEGLEA BIOTHERAPEUTICS 5 000 0,08%
AGIOS 5 000 0,08%
AKCEA THERAPEUTICS 10 000 0,15%
ALEXION 75 000 1,15%
ALLIEVEX 5 000 0,08%
ALNYLAM 20 000 0,31%
AMGEN EUROPE 10 000 0,15%
AMICUS THERAPEUTICS 20 000 0,31%
AMRYT 5 000 0,08%
ARGENX 10 000 0,15%
ASTELLAS 14 000 0,22%
AVROBIO  10 000 0,15%
BAYER 5 000 0,08%
BIOGEN 55 000 0,84%
BIOMARIN 29 000 0,45%
BLUEBIRD BIO 14 000 0,22%
BLUEPRINT MEDICINES 10 000 0,15%
BOEHRINGER INGELHEIM 10 000 0,15%
BRIDGEBIO  5 000 0,08%
BRISTOL-MYERS SQUIBB 108 000 1,66%
CHIESI 74 000 1,14%
CSL BEHRING 75 000 1,15%
CYTOKINETICS 30 000 0,46%
DICERNA 5 000 0,08%
ENZYVANT 5 000 0,08%
GILEAD 18 000 0,28%
GLOBAL BLOOD THERAPEUTICS     10 000 0,15%
GRIFOLS 5 000 0,08%
LUNDBECK 5 000 0,08%
HANSA BIOPHARMA 10 000 0,15%
HORIZON THERAPEUTICS 55 000 0,84%
INSMED    5 000 0,08%
IPSEN 30 000 0,46%
JANSSEN, a pharmaceutical company of J&J 75 000 1,15%
JAZZ PHARMACEUTICALS 5 000 0,08%
KYOWA KIRIN 48 588 0,75%
LEO PHARMA  20 000 0,31%
LYSOGENE 5 000 0,08%
MSD 10 000 0,15%
NEUROGENE 5 000 0,08%
NOVARTIS 73 000 1,12%
NOVARTIS GENE THERAPIES 5 000 0,08%
ORCHARD THERAPEUTICS 24 000 0,37%
OVID THERAPEUTICS 15 000 0,23%
PASSAGE BIO 5 000 0,08%
PFIZER 148 000 2,27%
PROQR 10 000 0,15%
PTC THERAPEUTICS 54 000 0,83%
RECORDATI RARE DISEASES 35 000 0,54%
REGENXBIO 9 000 0,14%
ROCHE 120 000 1,84%
SANGAMO 9 000 0,14%
SANOFI GENZYME 95 000 1,46%
SAREPTA THERAPEUTICS 14 000 0,22%
SOBI 30 000 0,46%
SPARK THERAPEUTICS 9 000 0,14%
TAKEDA 188 000 2,89%
TRAVERE THERAPEUTICS 5 000 0,08%
UCB 27 772 0,42%
ULTRAGENYX 4 000 0,06%
VERTEX 34 000 0,52%
VIFOR PHARMA 15 000 0,23%
ZAMBON 5 000 0,08%
Grand Total 1 859 360 28,57%

Other Health Sector Companies

Company Amount (€) % of Revenue
ALIRA HEALTH 5 000 0,08%
APARITO 1 200 0,02%
CLINIGEN 5 000 0,08%
CYDAN 5 000 0,08%
DRAVET SYNDROME FOUNDATION   1 400 0,02%
HEALX 5 000 0,08%
ICON 10 000 0,15%
ILLUMINA 30 000 0,46%
IQVIA 5 000 0,08%
MAYO CLINIC 4 500 0,07%
MEDICA TALENT GROUP 8 000 0,12%
PAREXEL 10 000 0,15%
QUALITY IMPROVEMENT CLINIC 2 800 0,04%
VOZ ADVISORS 15 000 0,23%
Grand Total 107 900 1,66%

Corporates Outside the Health Sector

Company Amount (€) % of Revenue
ANA MERLINO 4 100 0,06%
CAPGEMINI 1 000 0,02%
DLA PIPER 50 891 0,78%
LAWYER GILLIAN AUSTIN 443 0,01%
MAYNARD LEIGH 4 113 0,06%
SHAPE HISTORY  13 000 0,20%
SWW INTERCULTURAL TRAINING 2 200 0,03%
Grand Total 75 748 1,16%

EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2020:

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 2020. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European Conference for Rare Diseases and Orphan Products (ECRD) online, the EURORDIS Black Pearl Awards, as well as international initiatives such as Rare Disease Day, Rare Barometer, 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
Roche Bristol-Myers Squibb
5
Sanofi Genzyme

Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates

Abeona Aeglea Agios Akcea Alexion Alira Health Allievex Alnylam AMGEN Amicus Therapeutics Amryt Pharma Audentes Astellas AvroBioBayer Schering Pharma AG Biogen Idec Biomarin BlueBird Bio Blueprint medicines boehringer-ingelheim bridge-bio Chiesi Clinigen CSL Behring Cydan Cytokinetics Dicerna Enzyvant Gilead GBT Grifols Hansa HealX Horizon Pharma USA Illumina ICON insmed IpsenIQVIAJanssenJazz PharmaceuticalsKyowa Kirin LEO pharma Lundbeck Lysogene-QMSDNeurogeneNovartis Oncology Orchard OVID Parexel Passage BioProQR PTC Therapeutics Recordati RegenXBio Sangamo SareptaSOBI SparkTravere TherapeuticsUCB Ultragenyx Vertex Vifor VOZZambon

Other corporates

DLA Piper Shape History

Other contributors (in kind)

AIPM LogoAIPM LogoChan Zuckerberg Initiative logo

Special mention

We also would like to sincerely thank all the generous individuals and organisations from across many countries who made a gift to EURORDIS in 2020.

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases