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    Profile of registrant

EUROPEAN ORGANISATION FOR RARE DISEASES

Identification number in the register: 93272076510-87
Registration date: 30/08/2011 17:44:44

The information on this entity was last modified on: 23/04/2015 09:23:54
The date of the last annual update was: 23/04/2015 09:23:54
Next update due latest on: 23/04/2016

    Registrant : Organisation or self-employed individual

EUROPEAN ORGANISATION FOR RARE DISEASES

EURORDIS

ASSOCIATION

    Section of registration

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar

    Contact details

rue Didot, 96
Plateforme Maladies Rares
Paris 75014
FRANCE

(+331) 56535210

    Person with legal responsibility

Mr  Yann LE CAM

Chief Executive Officer

    Person in charge of EU relations

Ms  Flaminia Macchia

European Public Affairs Director

    Goals / remit

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, Council Recommendations, Cross Border Healthcare Directive and other relevant pieces of legislation), in the Commission Expert Group on Rare Diseases (CEGRD) and in the follow-up of National Plans/Strategies on RD.

European

    Specific activities covered by the Register

- The EU Public Health Programme 2014-2020: “Health for Growth” in general, with specific focus on issues relevant to the EU strategy on Rare Diseases
- The EU Research Programme 2014-2020: “Horizon 2020” in general, with particular focus on projects and EU collaboration relevant to the Rare Diseases field.

Main EU initiatives covered by EURORDIS and relevant to the activities falling under the scope of the Transparency Register include:

- Initiatives aimed at improving access to Orphan Medicinal Products (OMPs), such as the Mechanism of Coordinated Access to OMPs (the so-called MoCA initiative), the Medicine Adaptive Pathways to Patients (MAPPS), linked to the optimal use of the existing EU regulatory framework (conditional approval, exceptional circumstances, Risk/Benefit Management plans), the discussions around differential pricing, Joint Procurement, Managed Entry Agreements, EU cooperation on HTA;

- Follow-up on the implementation of the Directive on Patient’s Rights in Cross Border Healthcare (CBHC)

- All areas of implementation of the Commission Communication and Council Recommendations in the field of Rare Diseases

- 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 Commission Expert Group on Rare Diseases (CEGRD) 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 discussion around the implementation of the revised Clinical Trials Directive and the Personal Data Protection Directive.

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

All areas for implementation of the above-mentioned initiatives, policies and pieces of legislation represent areas of interest for EURORDIS and its Members and therefore EURORDIS is potentially called to act upon all these relevant files together with other stakeholders involved in the Rare Diseases fields, such as EU decisional makers, national authorities, private sector, Healthcare Professionals, HTA bodies, payers and regulators at both EU and national levels.

EURORDIS is the main organiser of the European Conference on Rare Diseases and Orphan Medicinal Products.


 

No

No

CERD

No

No

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.

    Number of persons involved in the activities described in the box above

100%: 8  

8

8

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

    Fields of interest

  • Employment and Social Affairs
  • Public Health
  • Research and Technology

    Membership and affiliation

0

http://www.eurordis.org/sites/default/files/members.pdf

  • 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
  • AUSTRALIA
  • BELARUS
  • BENIN
  • BRAZIL
  • BURKINA FASO
  • CANADA
  • CHINA
  • COLOMBIA
  • GEORGIA
  • GUATEMALA
  • HONG KONG
  • ICELAND
  • INDIA
  • IRAN, ISLAMIC REPUBLIC OF
  • JAPAN
  • KAZAKHSTAN
  • LEBANON
  • MACEDONIA, FORMER YUGOSLAV REPUBLIC OF
  • MALAYSIA
  • MEXICO
  • MOROCCO
  • NEPAL
  • NEW ZEALAND
  • NORWAY
  • RUSSIA, FEDERATION OF
  • SERBIA
  • SINGAPORE
  • SOUTH AFRICA
  • SWITZERLAND
  • TAIWAN
  • TURKEY
  • UKRAINE
  • UNITED STATES
  • URUGUAY

- 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

01/2013  -  12/2013

< 9,999 €

3,995,291 €

1,117,505 €

 €

1,101,444 €

DG SANTE HEALTH PROGRAMME, DG RESEARCH H2020, IMI-JU

16,061 €

2,877,786 €

839,604 €

691,697 €

1,076,699 €

183,823 €

34,104 €

51,859 €

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.