8^th WORKSHOP ON PARTNERING FOR RARE DISEASE THERAPY DEVELOPMENT
“The Reality of Orphan Medicines”
Danish parliament, Copenhagen, October 18-19, 2007
 

About EPPOSI

A patient-led EU partnership of
patients, academic science and industry,
working together to advance health-care policies for the prevention and treatment
of serious diseases

EPPOSI was founded in 1994 on the initiative of patients’ organisations, for the exchange of information and the discussion of human health care policies in the EU.
EPPOSI puts patients first in this dialogue, providing a forum for patients, academia, and industry to discuss innovation and policies for healthcare, health technology, and the health outcomes for patients, especially those affected by chronic, life-threatening diseases – including rare diseases. EPPOSI’s ambition is to develop strategies that benefit present and future generations.

Objectives

• To encourage timely and regular exchange of information between stakeholders on the latest developments in human health care related to (bio-)medical research, policy and regulations; on the ethical, social, legal and political aspects of this type of research, and on biotechnology, notably for its application to human health care
• To promote a mutual understanding between patients' organisations, science, industry, and EU institutions
• To contribute to equal access for all to human health care products and services in the EU
• To support patients' organisations in presenting timely and effective contributions to the European political debate on all matters that concern them
• To raise public awareness in Europe on the opinion of patients and their organisations
• To help sustain a dialogue within society on progress in medical science through new technologies
• To advocate the development of therapies for unmet medical needs and to facilitate partnerships within society
• To function as an information coordination centre that encourages discussion, opinionforming, and public debate in the area of human health care

Achievements
EPPOSI focuses on building dialogue, consensus positions and policy recommendations for the benefit of EU patients and consumers.
These consensus positions have provided building blocks for:

• the establishment of the European Orphan Medicinal Products Regulation
• the advancement of biomedical research and the value of innovation
• the timely access to innovative medicines
• several rare-disease therapy developments and partnerships
• East-West European collaboration among patient groups
• bio-banking

For more information, reports and publications, please visit our website or contact the EPPOSI office:

EPPOSI
Rue de l’industrie 4, B-1000 Brussels, Belgium
Tel.: + 32 2 503 13 07
Fax: + 32 2 503 31 08
info@epposi.org  - www.epposi.org