Registrant : Organisation or self-employed individual
| Name/company name: |
EUROPEAN ORGANISATION FOR RARE DISEASES |
| Acronym: |
EURORDIS
|
| Legal status: |
ASSOCIATION
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| Website address: |
http://www.eurordis.org
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Sections
| Section: |
III - Non-governmental organisations |
| and more precisely: |
Non-governmental organisations, platforms and networks and similar |
Person with legal responsibility
| Surname, Name: |
Mr
Yann LE CAM
|
| Position: |
Chief Executive Officer |
Permanent person in charge of EU relations
| Surname, Name: |
Mrs
Flaminia Macchia
|
| Position: |
European Public Affairs Director |
Contact details:
| Contact details of organisation's head office: |
96 rue Didot Plateforme Maladies Rares
Paris 75014
FRANCE
|
| Telephone number: |
(+331) 56535210 |
| Fax number: |
(+331) 56535215 |
| Other contact information: |
Brussels office Flaminia Macchia
Director for European Public Affairs
EURORDIS - European Organisation for Rare Diseases
Avenue Louise 149/24
1050 Bruxelles
Tel: +32 2 535 75 26
Fax: +32 2 535 75 75
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Goals / remit
| Goals / remit of the organisation: |
EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU. EURORDIS mission is to build a strong pan-European community of POs and People Living with RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.
To this end, EURORDIS undertakes activities on behalf of its members:
• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD
• Improving access to information, treatment, care and support for PLWRD
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD
EURORDIS plays a pivotal role in the implementation of the EU strategy on RD (EC Communication, December 2008 and Council Recommendations, June 2009), in the EU Committee of Experts on RD (EU CERD) and in the elaboration of National Plans or Strategies on RD.
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The organisation's fields of interests are:
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Number of persons engaged in activities falling under the scope of the Transparency Register
| Number of persons: |
27
|
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Complementary information:
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List of people officially representing EURORDIS at the EMA, EUCERD, as Board members or from the EU Public Affairs office based in Brussels.
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Persons accredited for access to European Parliament premises
Activities
Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:
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Main EU initiatives covered last year (2010) by activities falling under the scope of the Transparency Register include:
- Promoting better quality and access to healthcare services: Continued and successful discussions to promote the adoption of the EU Directive on Cross-Border Healthcare
- Improving access to orphan drugs: Actions to support the implementation of EURORDIS’ proposal for European collaboration on common scientific assessment of the Clinical Added Value of Orphan Drugs (CAVO D)
- Promoting national plans and strategies across Europe including 15 National Conferences on Rare Diseases organised in 15 countries by national rare disease alliances in partnership with national competent authorities and stakeholders, in the framework of the EC-funded project EUROPLAN, which gathered over 2 200 participants
- Contributing to the long-term governance of rare disease strategy and policies: 8 patient representatives have been appointed to the EU Committee of Experts on Rare Diseases (EUCERD) which held its 1st meeting in December 2010
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Fields of interest for e-mail alerts on consultations and roadmaps;
| Fields declared by the organisation: |
- Employment and Social Affairs
- Public Health
- Research and Technology
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Structure
| Total number of members that are natural persons: |
0 |
| Number of member organisations: |
0 |
| Member organisations (Number of members) : |
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| The organisation has members/is represented in the following country(countries): |
- AUSTRIA
- BELGIUM
- BULGARIA
- CYPRUS
- CZECH REPUBLIC
- DENMARK
- FINLAND
- FRANCE
- GERMANY
- GREECE
- HUNGARY
- IRELAND
- ITALY
- LATVIA
- LUXEMBOURG
- MALTA
- NETHERLANDS
- POLAND
- PORTUGAL
- ROMANIA
- SLOVAKIA
- SLOVENIA
- SPAIN
- SWEDEN
- UNITED KINGDOM
- ALGERIA
- ARGENTINA
- ARMENIA
- BURKINA FASO
- CANADA
- CROATIA
- GEORGIA
- ICELAND
- IRAN, ISLAMIC REPUBLIC OF
- MALAYSIA
- MEXICO
- NEW ZEALAND
- NORWAY
- RUSSIA, FEDERATION OF
- SERBIA
- SWITZERLAND
- TAIWAN
- TURKEY
- UKRAINE
- UNITED STATES
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Complementary information:
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Networking
Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.
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EURORDIS has 510 members in 48 countries.
The current formular does not allows us to enter these data.
List of members by countries at:
http://www.eurordis.org/membership
EUROPEAN PATIENT FORUM (EPF)
EUROPEAN CANCER COALITION (ECC)
PAN-EUROPEAN BLOOD SAFETY ALLIANCE (PBSA)
PLASMA PROTEIN USERS GROUP (PPUG)
PLASMA PROTEIN THERAPEUTICS ASSOCIATION (PPTA)
INTERNATIONAL CONFERENCE ON RARE DISEASES AND ORPHAN DRUGS (ICORD)
INTERNATIONAL ALLIANCE OF PATIENT ORGANISATIONS (IAPO)
EUROPEAN FORUM FOR GOOD CLINICAL PRACTICES (EFGCP)
EUROPEAN PLATFORM FOR PATIENT ORGANISATIONS, SCIENCE AND INDUSTRY (EPPOSI)
DRUG INFORMATION ASSOCIATION (DIA)
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Financial data
| Financial year: |
01/2011
-
12/2011
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Total budget:
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3,093,620
|
€
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of which public financing:
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886,567
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€
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- from European sources:
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- Procurement:
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€
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- Grants:
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814,521
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€
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- from national sources:
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72,046
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€
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- from local/regional sources:
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€
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from other sources: |
2,207,053
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€
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- donations:
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834,341
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€
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- contributions from members:
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893,246
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€
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- Volunteers :
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419,002
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€
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- Miscellaneous :
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60,464
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€
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Estimated costs to the organisation directly related to representing interests to EU institutions in that year:
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Other (financial) information provided by the organisation:
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EURORDIS has set a number of rules to avoid conflict of interest with Health's sector corporates. It is published on its website (EURORDIS Policy on Financial Support by Commercial Companies).
All donations are listed under the section "Financial information and Funding".
EURORDIS representatives to EMA must fulfill the EMA's Conflict of Interest rules.
EURORDIS must also fulfill the DG Sanco's rules regarding applicants to Operating Grants.
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