These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates. The following figures do not include provisions.
About Us
Our Funding
Reports
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Acknowledgements
EURORDIS would like to thank the following organisations and companies for their financial support in 2024:
Patient Organisations and Public Entities:
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
▪ The Operating Grant for year 2024
▪ EUCAPA-European Capacity Building for Patients (Action Grant)
▪ JARDIN (Joint Action)EUROPEAN COMMISSION DG Research and Innovation
▪ The European Joint Programme on Rare Diseases (EJP RD)
▪ European Rare Diseases Research Alliance (ERDERA)
▪ European Rare Disease Research Coordination and Support Action consortium (ERICA)
▪ Solving the Unsolved Rare Diseases (SolveRD)
▪ The Next Generation Health Technology Assessment (HTx)
▪ More Effectively Using Registries to suppOrt PAtient-centered Regulatory and HTA decision-making (More-EUROPA)
▪ REMEDi4ALL
▪ JOIN4ATMP
▪ The Innovative Health Initiative (earlier IMI2) projects:
◦ conect4children (c4c)
◦ Screen4Care
◦ FACILITATE – FrAmework for ClInicaL trIal participants’ daTA reutilization for a fully Transparent and Ethical ecosystemHealth 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. Health sector companies support EURORDIS through initiatives such as the EURORDIS Round Table of Companies, the European Membership Meeting, the EURORDIS Black Pearl Awards, Rare Disease Day, Rare Barometer, Rare Diseases International, the EURORDIS Open Academy, as well as through contributions to project development and the Rare Impact project. The breakdown of each company’s contributions by project is detailed on the “Corporate revenue” tab of the Financial Information section of our website.
Top Five Donors:
Other Pharmaceutical & Biotechnology Companies & Health Sector Corporates:
Foundations and non-profits:
Special mention
We also would like to sincerely thank all the generous individuals, organisations and companies from across many countries who made a gift to EURORDIS in 2024.
EURORDIS Policy on Financial Support by Commercial Companies
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Revenue
Revenue Amount (€) Percentage Patient Organisations 1 051 075 16% Financial contributions 670 000 10% – AFM Telethon 670 000 10% – Other Patient Organisations 0 0% In kind contributions (AFM) 249 850 4% Membership fees 131 225 2% Volunteers 508 047 8% European Commission 2 309 048 35% DG Research 923 006 14% DG Health and consumers 1 386 042 21% DG Employment -129 0% EMA contributions (*) 0 0% Corporates 2 022 785 31% Pharma. and Biotech Companies 1 947 560 30% Other Health Sector Corporates 75 225 1% Outside Health Sector Corporates 0 0% Not for Profit Organisations 333 294 5% Pharma. and Biotech Foundations 128 243 2% Other Health Sector NPOs 17 854 0% Outside Health Sector NPOs 187 197 3% Event Fees 149 702 2% Miscellaneous 85 334 1% Reimbursements 19 012 0% Others 66 322 1% Sub-total 6 564 830 100% Recovery of provisions 150 589 2% Total Revenue 6 715 419 -
Expenses
Expenses Amount (€) Percentage Staff 4 371 414 65% Wages and charges 4 080 602 60% Other salaries 254 848 4% Training and other costs 35 965 1% Volunteers 508 047 8% Representatives and task forces 508047 8% Logistics 696 527 10% Travels and subsistence 390 067 6% Event logistics and catering 306 460 5% Services 1 027 659 15% Fees 378 814 6% Partners 47 657 1% Telecom and post 36 393 1% Rent 347 870 5% Other services 216 925 3% Purchase 113 878 2% Office furniture 25 429 0% Amortisation 63 352 1% Communications, Publications 9 036 0% Other purchases 16 060 0% Miscellaneous 32 157 0% Financial expenses, Insurance, Tax 32 157 1% Sub-total 6 749 681 100% Contingency and loss provisions 311 339 5% Total Expenses 7 061 020 Result -345 601 -
Corporate revenue
Pharmaceutical & Biotechnology Companies Amount (€) % of Revenue ACADIA PHARMACEUTICALS 12 000 0,18% EURORDIS Round Table of Companies 12 000 AGIOS PHARMACEUTICALS 5 990 0,09% EURORDIS Round Table of Companies 5 990 ALEXION – ASTRAZENECA RARE DISEASE 87 000 1,33% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 20 000 EURORDIS International Initiatives 25 000 ECRD 2024 30 000 ALNYLAM 12 000 0,18% EURORDIS Round Table of Companies 12 000 AMGEN 82 000 1,25% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 25 000 EURORDIS Initiatives 20 000 Rare Barometer 5 000 ECRD 2024 20 000 AMICUS Therapeutics 22 000 0,34% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 AMYLYX PHARMACEUTICALS 22 000 0,34% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 AOP ORPHAN PHARMACEUTICALS 6 000 0,09% EURORDIS Round Table of Companies 6 000 APPLIED THERAPEUTICS 6 000 0,09% EURORDIS Round Table of Companies 6 000 ARGENX 37 000 0,56% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 ECRD 2024 15 000 ASTELLAS 12 000 0,18% EURORDIS Round Table of Companies 12 000 ASTRIA THERAPEUTICS 6 000 0,09% EURORDIS Round Table of Companies 6 000 AZAFAROS 6 000 0,09% EURORDIS Round Table of Companies 6 000 BAYER 6 000 0,09% EURORDIS Round Table of Companies 6 000 BEIGENE 6 000 0,09% EURORDIS Round Table of Companies 6 000 BIOCRYST PHARMACEUTICALS 12 000 0,18% EURORDIS Round Table of Companies 12 000 BIOGEN 41 000 0,62% EURORDIS Round Table of Companies 6 000 Black Pearl Awards 20 000 ECRD 2024 15 000 BIOMARIN 42 000 0,64% EURORDIS Round Table of Companies 12 000 ECRD 2024 15 000 Rare Barometer 15 000 BLUEPRINT MEDICINES 12 000 0,18% EURORDIS Round Table of Companies 12 000 BOEHRINGER INGELHEIM 57 000 0,87% EURORDIS Round Table of Companies 12 000 ECRD 2024 15 000 EURORDIS Initiatives 20 000 Rare Barometer 10 000 BRIDGEBIO 15 970 0,24% EURORDIS Round Table of Companies 6 000 EURORDIS International Initiatives 9 970 BRISTOL MYERS SQUIBB 36 000 0,55% EURORDIS Round Table of Companies 6 000 EURORDIS International Initiatives 20 000 Rare Barometer 10 000 CAMURUS 6 000 0,09% EURORDIS Round Table of Companies 6 000 CHIESI 63 850 0,97% EURORDIS Round Table of Companies 30 000 ECRD 2024 30 000 EURORDIS Initiatives 3 850 CSL BEHRING 85 000 1,29% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 20 000 ECRD 2024 15 000 Rare Barometer 15 000 Project Development 5 000 CSL VIFOR 22 000 0,34% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 CYTOKINETICS 20 000 0,30% Black Pearl Awards 20 000 EGETIS 6 000 0,09% EURORDIS Round Table of Companies 6 000 EMMES BIOPHARMA 6 000 0,09% EURORDIS Round Table of Companies 6 000 FERRER 6 000 0,09% EURORDIS Round Table of Companies 6 000 GRIFOLS 6 000 0,09% EURORDIS Round Table of Companies 6 000 IMMEDICA 12 000 0,18% EURORDIS Round Table of Companies 12 000 INCYTE 6 000 0,09% EURORDIS Round Table of Companies 6 000 INSMED 6 000 0,09% EURORDIS Round Table of Companies 6 000 IONIS PHARMACEUTICALS 12 000 0,18% EURORDIS Round Table of Companies 12 000 IPSEN 27 000 0,41% EURORDIS Round Table of Companies 12 000 ECRD 2024 15 000 JANSSEN 52 000 0,79% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 25 000 Rare Barometer 15 000 JAZZ PHARMACEUTICALS 5 990 0,09% EURORDIS Round Table of Companies 5 990 KYOWA KIRIN 21 000 0,32% EURORDIS Round Table of Companies 6 000 ECRD 2024 15 000 LUNDBECK 6 000 0,09% EURORDIS Round Table of Companies 6 000 MERCK 12 000 0,18% EURORDIS Round Table of Companies 12 000 MEREO BIOPHARMA 6 000 0,09% EURORDIS Round Table of Companies 6 000 MODERNA 16 000 0,24% EURORDIS Round Table of Companies 6 000 Black Pearl Awards 10 000 MSD 6 000 0,09% EURORDIS Round Table of Companies 6 000 NOVARTIS 70 000 1,07% EURORDIS Round Table of Companies 30 000 ECRD 2024 15 000 EURORDIS Initiatives 15 000 Rare Barometer 10 000 NOVO NORDISK 12 000 0,18% EURORDIS Round Table of Companies 12 000 ORCHARD THERAPEUTICS 27 000 0,41% EURORDIS Round Table of Companies 12 000 EURORDIS Initiatives 10 000 Rare Barometer 5 000 ORPHALAN 10 000 0,15% Black Pearl Awards 10 000 OVID THERAPEUTICS 6 000 0,09% EURORDIS Round Table of Companies 6 000 PASSAGE BIO 6 000 0,09% EURORDIS Round Table of Companies 6 000 PFIZER 140 000 2,13% EURORDIS Round Table of Companies 30 000 ECRD 2024 30 000 EURORDIS Initiatives 60 000 Rare Barometer 20 000 PTC THERAPEUTICS 27 000 0,41% EURORDIS Round Table of Companies 12 000 ECRD 2024 15 000 RECORDATI RARE DISEASES 10 000 0,15% Black Pearl Awards 10 000 ROCHE 112 000 1,71% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 20 000 ECRD 2024 15 000 EURORDIS Initiatives 40 000 Rare Barometer 10 000 Project Development 15 000 SANOFI 130 000 1,98% EURORDIS Round Table of Companies 30 000 ECRD 2024 30 000 EURORDIS Initiatives 40 000 Rare Barometer 30 000 SANTEN 12 000 0,18% EURORDIS Round Table of Companies 12 000 SAREPTA THERAPEUTICS 12 000 0,18% EURORDIS Round Table of Companies 12 000 SERVIER 21 000 0,32% EURORDIS Round Table of Companies 6 000 EURORDIS Initiatives 15 000 SHIONOGI 6 000 0,09% EURORDIS Round Table of Companies 6 000 SOBI 22 000 0,34% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 10 000 TAKEDA 170 000 2,59% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 25 000 ECRD 2024 30 000 EURORDIS Initiatives 65 000 Rare Barometer 20 000 UCB BIOPHARMA 85 000 1,29% EURORDIS Round Table of Companies 30 000 Black Pearl Awards 25 000 ECRD 2024 30 000 ULTRAGENYX 12 000 0,18% EURORDIS Round Table of Companies 12 000 VERTEX 77 000 1,17% EURORDIS Round Table of Companies 12 000 Black Pearl Awards 20 000 ECRD 2024 20 000 EURORDIS Initiatives 25 000 ZAMBON 6 000 0,09% EURORDIS Round Table of Companies 6 000 Other Health Sector Companies Amount (€) % of Revenue ALIRA HEALTH 6 000 0,09% EURORDIS Round Table of Companies 6 000 ARVATO 2 000 0,03% Unrestricted 2 000 ILLUMINA 31 225 0,48% EURORDIS Round Table of Companies 12 000 Rare Barometer 19 225 IQVIA 6 000 0,09% EURORDIS Round Table of Companies 6 000 PAREXEL 12 000 0,18% EURORDIS Round Table of Companies 12 000 SCIENCUS 12 000 0,18% EURORDIS Round Table of Companies 12 000 VOZ ADVISORS 6 000 0,09% EURORDIS Round Table of Companies 6 000 Misc 871,50 Total 2 001 025
Financial reports
- Financial Report 2024 (PDF 2,8 M)
- Financial Report 2023 (PDF 2,9M)
- Financial Report 2022 (PDF 2,3M)
- 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)