Navigation path

Additional tools

  • Print version
  • Decrease text
  • Increase text
  • Choose high contrast version
  • Choose standard colour version




Profile of registrant

EUROPEAN ORGANISATION FOR RARE DISEASES

Identification number in the register: 93272076510-87
Registration date: 30/08/11 17:44:44

The information on this organisation was last modified on 21/08/13 17:23:09
The date of the last annual update was 19/08/13 08:54:43


Registrant : Organisation or self-employed individual

Name/company name: EUROPEAN ORGANISATION FOR RARE DISEASES
Acronym: EURORDIS
Legal status: ASSOCIATION
Website address: http://www.eurordis.org

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

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 and Council Recommendations), in the EU Committee of Experts on RD (EU CERD) and in the elaboration of National Plans or Strategies on RD.
The organisation's fields of interests are:
  • European

Number of persons engaged in activities falling under the scope of the Transparency Register

Number of persons: 27
Complementary information: List of people officially representing EURORDIS at the EMA, EUCERD, as Board members or from the EU Public Affairs office based in Brussels.

Persons accredited for access to European Parliament premises

No accredited persons

Activities

Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:


Main EU initiatives covered last year (2012-2013) 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 transposition at national level 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 assessment of the Clinical Added Value of Orphan Medicinal Products (CAVOMP), the Mechanism of Coordinated Access to OMPs (MoCA), the Adaptive licensing or progressive patients’ access, and the debate on the differential pricing approach.

- Promoting national plans and strategies across Europe including National Conferences on Rare Diseases organised by national rare disease alliances in partnership with national competent authorities and stakeholders, in the framework of the EC-funded project EUROPLAN.

- Contributing to the long-term governance of rare disease strategy and policies: patient representatives have been appointed to the EU Committee of Experts on Rare Diseases (EUCERD) and attended and will continue to attend the meetings and workshops of this expert group.

- Activities around the promotion of Rare Disease research priorities, patients’ registries and bio-banks.

- Active participation to the revision of the Clinical Trials Directive, the Transparency Directive and the Personal Data Protection Directive.

- Participation to the emerging debate on genetic testing and fight against genetic discrimination.

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

Structure

Total number of members that are natural persons: 0
Number of member organisations: 0
Member organisations (Number of members) :
The organisation has members/is represented in the following country(countries):
  • AUSTRIA
  • BELGIUM
  • BULGARIA
  • CROATIA
  • CYPRUS
  • CZECH REPUBLIC
  • DENMARK
  • ESTONIA
  • FINLAND
  • FRANCE
  • GERMANY
  • GREECE
  • HUNGARY
  • IRELAND
  • ITALY
  • LATVIA
  • LUXEMBOURG
  • NETHERLANDS
  • POLAND
  • PORTUGAL
  • ROMANIA
  • SLOVAKIA
  • SLOVENIA
  • SPAIN
  • SWEDEN
  • UNITED KINGDOM

  • ALGERIA
  • ARGENTINA
  • ARMENIA
  • BELARUS
  • BRAZIL
  • BURKINA FASO
  • CANADA
  • GEORGIA
  • HONG KONG
  • ICELAND
  • IRAN, ISLAMIC REPUBLIC OF
  • JAPAN
  • LEBANON
  • MACEDONIA, FORMER YUGOSLAV REPUBLIC OF
  • MALAYSIA
  • MEXICO
  • NEW ZEALAND
  • NORWAY
  • RUSSIA, FEDERATION OF
  • SERBIA
  • SINGAPORE
  • SOUTH AFRICA
  • SWITZERLAND
  • TAIWAN
  • TURKEY
  • UKRAINE
  • UNITED STATES
  • URUGUAY
Complementary information: EURORDIS has 590 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

Networking

Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.




- EUROPEAN PATIENT FORUM (EPF)
- PAN-EUROPEAN BLOOD SAFETY ALLIANCE (PBSA)
- PLASMA PROTEIN USERS GROUP (PPUG)
- PLASMA PROTEIN THERAPEUTICS ASSOCIATION (PPTA)
- EUROPEAN ALLIANCE FOR PERSONALISED MEDICINES (EAPM), Observer
- 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)

Financial data

Financial year: 01/2012 - 12/2012
Total budget: 4,080,170
of which public financing: 980,994
- from European sources:
- Procurement:
- Grants: 953,877
- from national sources: 27,117
- from local/regional sources:
from other sources: 3,099,176
- donations:
- contributions from members: 934,768
Volunteers : 588,629
Corporates : 1,078,447
Not for Profit Organisations : 175,675
Event Fees : 277,562
Miscellaneous : 44,095
Estimated costs to the organisation directly related to representing interests to EU institutions in that year:
Other (financial) information provided by the organisation:

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.

Code of conduct

By its registration the organisation has signed the Transparency Register Code of Conduct.