Financial Information

These accounts have been produced by chartered accountants and reviewed by our statutory auditor Deloitte & Associates.

Revenue 2015
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Expenses 2015

EURORDIS Expenses 2015

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Expenses Amount (€) Percentage
Staff 2 286 542 45%
Volunteers 986 216 20%
Travel and subsistence 557 718 11%
Services 1 109 722 22%
Purchase 92 580 2%
Miscellaneous 16 708 0%
Total Expenses 5 049 487 100%
Result 53 169

EURORDIS Revenue 2015

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Revenue Amount (€) Percentage
Patient Organisations 855 856 17%
Individuals 997 913 20%
European Commission 1 504 585 30%
National authorities 10 979 0%
Corporates 1 408 296 28%
Not for Profit Organisations 97 848 2%
Event Fees 47 375 1%
Miscellaneous 176 534 3%
Sub-total 5 099 384 100%
Recovery of Provisions 3 272  
Total revenue 5 102 656  

EURORDIS Corporate Revenue 2015

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Pharmaceutical & Biotechnology Companies

Company Amount (€) % of total Revenue
ACTELION Total 35 000 0,69%
AEGERION Total 10 000 0,20%
ALEXION Total 29 475 0,58%
AMGEN Total 5 000 0,10%
AMICUS THERAPEUTICS Total 8 000 0,16%
ARIAD Total 25 385 0,50%
ASTRAZENECA Total 25 000 0,49%
BAXTER Total 10 000 0,20%
BAYER Total 40 000 0,78%
BIOGEN Total 35 000 0,69%
BIOMARIN Total 50 000 0,98%
BLUEBIRD BIO Total 5 000 0,10%
BOEHRINGER INGELHEIM Total 10 000 0,20%
BRISTOL-MYERS SQUIBB Total 10 000 0,20%
CELGENE Total 96 843 1,90%
CHIESI Total 40 000 0,78%
CLOVIS ONCOLOGY Total 5 000 0,10%
CSL BEHRING Total 40 305 0,79%
CYTOKINETICS Total 10 000 0,20%
DOMPE Total 5 000 0,10%
GENZYME Total 50 000 0,98%
GRIFOLS Total 10 000 0,20%
GSK Total 70 000 1,37%
HELSINN Total 9 737 0,19%
HORIZON Total 5 000 0,10%
HRA PHARMA Total 5 000 0,10%
INSMED Total 10 000 0,20%
JAZZ Total 10 000 0,20%
LABORATOIRES CTRS Total 15 000 0,29%
LFB BIOMEDICAMENTS Total 10 000 0,20%
LUNDBECK Total 5 000 0,10%
LYSOGENE Total 2 000 0,04%
MERCK Total 10 000 0,20%
NOVARTIS Total 50 000 0,98%
NPS PHARMA Total 10 000 0,20%
ORPHAN EUROPE Total 15 000 0,29%
PFIZER Total 80 000 1,57%
PHARMA MAR Total 5 000 0,10%
PTC Total 35 000 0,69%
RAPTOR Total 45 000 0,88%
ROCHE Total 20 000 0,39%
SANTHERA Total 12 369 0,24%
SAREPTA Total 8 000 0,16%
SHIRE Total 85 000 1,67%
SIGMA-TAU Total 25 385 0,50%
SOBI Total 19 737 0,39%
SYNAGEVA Total 10 000 0,20%
THERAKOS Total 25 000 0,49%
UCB Total 5 000 0,10%
ULTRAGENYX Total 15 769 0,31%
VERTEX Total 40 000 0,78%
Subtotal Pharmaceutical & Biotechnology Companies 1 213 005 23,79%

Other Health Sector Companies

CYDAN Total 5 000 0,10%
IDIS-CLINIGEN Total 20 000 0,39%
MAPI Total 10 000 0,20%
MARK KRUEGER & ASSOCIATES Total 3 000 0,06%
OPENAPP Total 5 000 0,10%
Total 43 000 0,84%

Outside Health Sector Corporates

ARES 7 500 0,15%
BURSON MARSTELLER 9 500 0,19%
DLA PIPER 25 667 0,50%
ENFIN BREF PRODUCTION 30 442 0,60%
MEDIA PLANET 30 329 0,59%
MULTIBURO 10 512 0,21%
PUBLICIS LIFEBRAND 38 340 0,75%
Total 152 291 2,99%


*Cutoff is the total 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.

» 2015 financial independence form
» EURORDIS Policy on Financial Support by Commercial Companies

 

In addition to the organisations accredited (on the right-hand side), EURORDIS gratefully acknowledges the generous support of the following contributors in 2015:

Not-for-Profit Organisations and Public Entities

AIPM Logo

AIPM


The Association of International Pharmaceutical Manufacturers, for co-funding the Russian version of the EURORDIS Website and eNews

efpia

EFPIA, European Federation of
Pharmaceutical Industries and Associations


The European Federation of Pharmaceutical Industries and Associations, for co-funding the Innovative Medicines Initiative-Joint Understanding (IMI-JU) project: European Patients Academy on Therapeutic Innovation (EUPATI)

EveryLife Foundation

EveryLife Foundation for Rare Diseases

For Black Pearl Evening 2015 contribution


Carlo Hintermann and Moonchausen

Rare Diseases International Members

EURORDIS thanks the following members of Rare Diseases International for their voluntary contributions: Alliance Maladies Rares - Debra International - Genetic Alliance Australia Ltd - Hong Kong Alliance for Rare Diseases - IPOPI - Retina International

Pharmaceutical and Biotech Companies

EURORDIS has diversified its pharmaceutical and biotechnology sector companies’ sponsorship from 43 to 51 different companies in 2015. EURORDIS believes that diversification of funding is a key success factor to minimise potential conflict of interest with donors. Companies have supported EURORDIS primarily through the EURORDIS Round Table of Companies , the EURORDIS Membership Meeting 2015 Madrid, the RareConnect Online Patients Communities , Rare Diseases International and the EURORDIS Black Pearl Evening. The breakdown of each company’s donations by project is detailed on our website on the “Corporate” tab of the “Financial Information” section.

The Top Five Corporate Donors:

1.Shire
2.Celgene
3.Pfizer
4.GlaxoSmithKline
5.Biomarin
5.Sanofi Genzyme
5.Novartis

Other pharmaceutical companies:

The 44 other donors are listed in alphabetical order.

Actelion
Aegerion
Alexion
AMGEN
Amicus Therapeutics
Ariad
AstraZeneca
Baxter
Bayer Schering Pharma AG
Biogen Idec
BlueBird Bio
boehringer-ingelheim
BMS
Chiesi
Clovis Oncology
CLS Behring
Cell therapies, Research and Services
Cytokinetics
Dompe Farmaceutici
Grifols
Helsinn
Horizon Pharma USA
HRA Pharma
Helsinn
Jazz pharmaceuticals
LFB
Lundbeck
Lysogene-Q
Merck Serono
NPS Pharma
Orphan Europe
Pharma Mar
PTC Therapeutics
Raptor
Roche
Santhera
Sarepta
sigma tau
SOBI
Synageva
Therakos
UCB
Ultragenyx
Vertex

Other Health Sector Corporates

Cydan

Cydan

For EURORDIS Round Table of Companies contribution


Clinigen

Clinigen


For EURORDIS Round Table of Companies contribution and Black Pearl Evening 2015 contribution

MAPI

Mapi

For EURORDIS Round Table of Companies contribution


OpenApp

OpenApp

For EURORDIS Round Table of Companies contribution


Mark Krueger & Associates Logo

Mark Krueger & Associates, Inc


For EURORDIS Round Table of Companies contribution and Black Pearl Evening 2015 contribution

Other contributors

ares

ARES

For EURORDIS Black Pearl Gala Dinner 2015 contribution


Burson-Marsteller

Burson-Marsteller

For on-going in-kind contribution of communications advice to build awareness of rare diseases


DLA Piper

DLA Piper UK LLP

For in-kind contribution of legal services


DLA Piper

Enfin Bref Production

For in-kind production of the Rare Disease Day 2015 video


Mediaplanet

Mediaplanet

For in-kind contribution of communications services in the context of Rare Disease Day 2015

Mediaplanet

Publicis Lifebrands International

For in-kind communications work on the Rare Disease Day International campaign

Mediaplanet

SIRIMAGE

In-kind filming services of patient testimonials

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS RareConnect 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