Rare Diseases Research: Building on Success – a European Conference

The aims of the conference are to
provide the rare disease community with the opportunity to express
their needs in terms of research; provide the European Commission with
a strong basis for the future FP7 calls for proposals; and increase the
visibility of rare disease research, thereby benefiting the rare
disease scientific community. The conclusions from the conference will
be presented at the European Conference on Rare Diseases in Lisbon in
November 2007 (ECRD Lisbon 2007).
Fabrizia Bignami, Therapeutic Development Officer at Eurordis, is on
the Organising Committee for the conference. `As patients, we can thank
the DG Research and the European Commission for putting rare diseases
on the agenda of research at the EU level,` she says. `We patients are
very happy to be stakeholders in the process, along with the European
Commission and researchers. We hope to actively contribute to the
definition of future rare disease research orientations.`

For more information:

EU Research

7th Framework Programme

Research Programmes and Projects

Eurordis` position paper on research

Eurordis` membership meeting 2007 Paris and European workshop, “Gaining Access to Rare Disease Research Resources.”

The ICORD 2007 Meeting will be open to all that are interested. It will
focus on the areas that were identified as important for improved global
collaboration at the Madrid Meeting 2006:

  1. Gaining Regulatory
    Approval: Establishing and Meeting Regulatory Requirements

  2. Product Discovery and
    Development: Linking the Academic Research Community to the
    Pharmaceutical, and Biotechnology Industries

  3. Development of Rare
    Diseases Research and Orphan Products Development Assessment Tools:
    Possibilities Restrictions, and Solutions

  4. Recruiting Patients for
    Clinical Research Studies and the Value of International Collaboration

  5. Genetic Testing for Rare
    Diseases in an International Perspective

  6. Patient and Family Needs
    across the Lifespan: the Value of International Collaboration

  7. Rare Diseases Research and
    Orphan Products Development Activities in Developing Nations

To register please fill out the Registration
form and fax to the ICORD 2007 secretariat. For further information please
see the ICORD 2007
Meeting Package and the Program

For information on the DG Research conference Rare Diseases: Building on
Success, see the
CORDIS website

For additional information contact [email protected] or [email protected].