These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures (Revenue, 5 970 k€ – Expenses, 5 617 k€) do not include provisions.
Our Funding
Reports
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Acknowledgements
EURORDIS would like to thank the following organisations and companies for their financial and in kind support in 2021:
Patient Organisations and Public Entities
EURORDIS would like to thank the following organisations for their highly valued support in 2021:
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 2021
- Rare 2030, Foresight in Rare Diseases Policy
- RD-Code project
DG Research and Innovation, for its essential contribution to the following projects:
- The European Joint Programme Rare Diseases (EJP)
- The Next Generation Health Technology Assessment (HTx)
- The Solve-RD Project -Solving the Unsolved Rare Diseases
- European Rare disease research coordination and
support action (ERICA) - The Innovative Medicines Initiative-Joint Undertaking (IMIJU) projects:
- conect4children, a Collaborative Network for European Clinical Trials For Children
- ‘Shortening the path to rare disease diagnosis by using newborn genetic screening and digital technologies’ — ‘SCREEN4CARE
Health Sector Corporates
EURORDIS appreciates the contributions received from health sector companies. Ensuring a sustained variety of funding is key to minimise potential conflicts of interest. EURORDIS had 77 different health sector corporate donors in 2021. Health sector companies have supported EURORDIS through the EURORDIS Round Table of Companies, the European Membership Meeting, the EURORDIS Black Pearl Awards, as well as international initiatives such as Rare Disease Day, Rare Barometer, Rare Diseases International, EURORDIS Open Academy and multi-lingual communications, as well as through contributions supporting project development and the Rare Impact project. The breakdown of each company’s donations by project is detailed on the “Corporate revenue” tab of the “Financial Information” section.
Top five donors
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4
5
Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates
Other contributors (in kind)
Foundations and non profits
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 2021.
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Revenue
Revenue Amount (€) Percentage Patient Organisations 976 134 16% Financial contributions 651 480 11% – AFM Telethon 600 000 10% – Other Patient Organisations 51 480 1% In kind contributions (AFM) 227 129 4% Membership fees 97 525 2% Individuals 749 919 13% Volunteers 706 376 12% Donations 43 543 1% European Commission 1 622 543 27% DG Research 456 758 8% DG Health and consumers 1 165 785 20% DG Employment EMA contributions (*) Corporates 2 241 028 38% Pharma. and Biotech Companies 2 112 000 35% Other Health Sector Corporates 106 500 2% Outside Health Sector Corporates 22 528 0% Not for Profit Organisations 355 042 6% Pharma. and Biotech Foundations 12 000 0% Other Health Sector NPOs 68 614 1% Outside Health Sector NPOs 274 428 5% Event Fees 1 585 0% Miscellaneous 24 163 0% Reimbursements 12 127 0% Others 12 036 0% Sub-total 5 970 413 100% Recovery of provisions 107 504 Total Revenue 6 077 917 -
Expenses
Expenses Amount (€) Percentage Staff 3 578 630 64% Wages and charges 3 385 874 60% Other salaries 151 245 3% Training and other costs 41 511 1% Volunteers 706 376 13% Representatives and task forces 523 496 9% Project, office and translators 182 880 3% Logistics 179 460 3% Travels and subsistence 56 687 1% Event logistics and catering 20 897 0% Virtual events 101 876 2% In kind contributions
covering travel/accommodation costs for EMA MeetingsServices 1 033 718 18% Fees 540 910 10% Telecom and post 39 167 1% Rent 312 070 6% Other services 141 571 3% Purchase 88 382 2% Office furniture 34 284 1% Amortisation 33 469 1% Communications, Publications 8 657 0% Other purchases 11 972 0% Miscellaneous 30 515 1% Financial expenses, Insurance, Tax 29 350 1% Exceptional expenses 1 165 0% Sub-total 5 617 082 100% Contingency and loss provisions 53 205 1% Total Expenses 5 670 287 Result 407 631 -
Corporate revenue
Pharmaceutical & Biotechnology Companies
Company Amount (€) % of Revenue AEGLEA BIOTHERAPEUTICS 5 000 0,08%
EURORDIS Round Table of Companies 5 000 0,08% AGIOS PHARMACEUTICALS INC. 5 000 0,08%
EURORDIS Round Table of Companies 5 000 0,08% ALEXION SERVICES EUROPE 75 000 1,26% EURORDIS Round Table of Companies 25 000 0,42% Black Pearl Awards 10 000 0,17% EURORDIS International Initiatives 25 000 0,42% EURORDIS Membership Meeting 15 000 0,25% ALNYLAM NETHERLANDS BV 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% AMGEN EUROPE 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% AMICUS THERAPEUTICS UK LTD 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 10 000 0,17% ARGENX BVBA 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% ASTELLAS GENE THERAPIES (ex Andentes) 30 000 0,50% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% BAYER AG 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% BIOCRYST PHARMACEUTICALS, INC 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% BIOGEN (Czech Republic) s.r.o. 35 000 0,59% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 25 000 0,42% BIOMARIN 35 000 0,59% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 15 000 0,25% BLUEBIRD BIO 20 000 0,33% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% BLUEPRINT MEDICINES 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% BOEHRINGER INGELHEIM INTERNATIONAL GMBH 30 000 0,50% EURORDIS Round Table of Companies 10 000 0,17% Awareness, Empowerment, and Networking 20 000 0,33% BRIDGEBIO 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% BRISTOL-MYERS SQUIBB (BMS) 82 000 1,37% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 20 000 0,33% EURORDIS International Initiatives 32 000 0,54% CAMURUS AB 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% CHIESI 80 000 1,34% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% Unsolicitated Donation 10 000 0,17% EURORDIS International Initiatives 35 000 0,59% EURORDIS Membership Meeting 15 000 0,25% CSL BEHRING 100 000 1,67% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 25 000 0,42% Black Pearl Awards 20 000 0,33% Rare Barometer 15 000 0,25% EURORDIS Membership Meeting 15 000 0,25% Project Development 5 000 0,08% CYTOKINETICS, INC. 30 000 0,50% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 20 000 0,33% DAIICHI SANKYO EUROPE GMBH 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% EDITAS MEDICINE 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 10 000 0,17% ENZYVANT 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% EUSA PHARMA 5 000 0,08% Unsolicitated Donation 5 000 0,08% GALAPAGOS GMBH 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% GILEAD SCIENCES BELUX 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% GRIFOLS S.A. 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% HANSA BIOPHARMA AB 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% HORIZON THERAPEUTICS 55 000 0,92% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 20 000 0,33% EURORDIS International Initiatives 25 000 0,42% INSMED IRELAND LTD. 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% IONIS PHARMACEUTICALS, INC. 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% IPSEN PHARMA 25 000 0,42% EURORDIS Round Table of Companies 10 000 0,17% EURORDIS Membership Meeting 15 000 0,25% JANSSEN, a J&J company 75 000 1,26% EURORDIS Round Table of Companies 25 000 0,42% Black Pearl Awards 35 000 0,59% Rare Barometer 15 000 0,25% JAZZ PHARMACEUTICALS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% KYOWA KIRIN 45 000 0,75% EURORDIS Round Table of Companies 10 000 0,17% EURORDIS International Initiatives 20 000 0,33% EURORDIS Membership Meeting 15 000 0,25% LEO PHARMA A/S 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 10 000 0,17% LUNDBECK A/S 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% LYSOGENE 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% MEREO BIOPHARMA GROUP PLC 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% MSD EUROPE 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% NEUROGENE INC. 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% NOVARTIS 80 000 1,34% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 30 000 0,50% EURORDIS International Initiatives 25 000 0,42% EURORDIS Membership Meeting 15 000 0,25% ORCHARD THERAPEUTICS 30 000 0,50% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% OVID THERAPEUTICS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% PFIZER 140 000 2,34% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 25 000 0,42% Awareness, Empowerment, and Networking 85 000 1,42% Project Development 10 000 0,17% PROQR THERAPEUTICS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% PTC THERAPEUTICS 60 000 1,00% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 25 000 0,42% EURORDIS International Initiatives 25 000 0,42% RECORDATI RARE DISEASES 35 000 0,59% Black Pearl Awards 20 000 0,33% EURORDIS Membership Meeting 15 000 0,25% REGENXBIO INC. 15 000 0,25% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 5 000 0,08% ROCHE 125 000 2,09% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 25 000 0,42% Black Pearl Awards 25 000 0,42% EURORDIS International Initiatives 40 000 0,67% EURORDIS Membership Meeting 15 000 0,25% SANGAMO THERAPEUTICS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% SANIONA 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% SANOFI GENZYME 160 000 2,68% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 25 000 0,42% Rare Barometer 60 000 1,00% EURORDIS International Initiatives 40 000 0,67% EURORDIS Membership Meeting 15 000 0,25% SANTEN PHARMACEUTICAL 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% SAREPTA THERAPEUTICS 20 000 0,33% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% SPARK THERAPEUTICS, INC. 15 000 0,25% Rare Impact 10 000 0,17% EURORDIS Round Table of Companies 5 000 0,08% SWEDISH ORPHAN BIOVITRUM BVBA 45 000 0,75% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% Rare Barometer 10 000 0,17% Project Development 15 000 0,25% TAKEDA PHARMACEUTICALS INTERNATIONAL AG 240 000 4,02% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 25 000 0,42% Black Pearl Awards 25 000 0,42% Rare Barometer 60 000 1,00% EURORDIS International Initiatives 95 000 1,59% EURORDIS Membership Meeting 15 000 0,25% TAYSHA GENE THERAPIES 25 000 0,42% EURORDIS Round Table of Companies 25 000 0,42% TRAVERE THERAPEUTICS (ex Retrophin) 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% UCB BIOPHARMA SPRL 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% ULTRAGENYX 10 000 0,17% Rare Impact 10 000 0,17% VERTEX PHARMACEUTICALS 80 000 1,34% Rare Impact 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% EURORDIS International Initiatives 40 000 0,67% VIFOR PHARMA GROUP 20 000 0,33% EURORDIS Round Table of Companies 10 000 0,17% Black Pearl Awards 10 000 0,17% ZAMBON S.P.A. 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% Grand Total 2 112 000 35,19% Other Health Sector Companies
Company Amount (€) % of Revenue ALIRA HEALTH SAS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% APARITO 1 000 0,02% Open Academy 1 000 0,02% BIOAGILYTIX LABS LLC 4 500 0,08% Unsolicitated Donation 4 500 0,08% BIONICAL EMAS 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% CLINIGEN GROUP 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% HEALX 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% ICON CLINICAL RESEARCH S.A.R.L 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% ILLUMINA CAMBRIDGE LTD. 31 000 0,52% EURORDIS Round Table of Companies 10 000 0,17% Rare Barometer 21 000 0,35% IQVIA 5 000 0,08% EURORDIS Round Table of Companies 5 000 0,08% PAREXEL INTERNATIONAL 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% SCIENSUS INTERNATIONAL B.V. 10 000 0,17% EURORDIS Round Table of Companies 10 000 0,17% VOZ ADVISORS 15 000 0,25% EURORDIS Round Table of Companies 5 000 0,08% Black Pearl Awards 10 000 0,17% Grand Total 106 500 1,78% Corporates Outside the Health Sector
Company Amount (€) % of Revenue ANA MERLINO 2 100 0,04% Open Academy 2 100 0,04% MEDICA TALENT GROUP 6 000 0,10% Open Academy 6 000 0,10% MAYNARD LEIGH 4 100 0,07% Open Academy 4 100 0,07% DLA PIPER 10 328,41 0,17% Core 10 328,41 0,17% Grand Total 22 528,41 0,38%
Financial reports
- Financial Report 2021 (PDF 1,8 M)
- Financial Report 2020 (PDF 2,4 M)
- Financial Report 2019 (PDF 3,2 M)
- Financial Report 2018 (PDF 2,9 M)
- 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)