SEVENTH WORKSHOP ON PARTNERING FOR RARE
DISEASE THERAPY DEVELOPMENT
Madrid, 26-27 October 2006
“Positioning Rare Diseases on the Healthcare Agenda”
About EPPOSI
The European Platform for Patients’ Organisations, Science and Industry (EPPOSI) is a Europe-wide partnership between patients, academic science and industry, founded in 1994 for the exchange of information and discussion of policies in human healthcare.
EPPOSI’s primary mission is to establish and foster a strong European stakeholder platform to work on healthcare policies towards the treatment and prevention of serious diseases.
EPPOSI – A Unique Opportunity:
EPPOSI is unique in representing the partnership between patients, academia and industry. All of these have a stake in policies that affect healthcare and the health outcomes of patients, especially those suffering from life-threatening and serious diseases including rare diseases. Joining this partnership provides the opportunity to participate in debates and to benefit from the pool of experts and committed people who support EPPOSI’s cause to have wider and quicker access to essential medical treatment.
Achievements:
Thanks to this distinctive multi-stakeholder approach which permeates its spirit, organisational structure and activities, EPPOSI has been successful, for example, in reaching consensus between the different stakeholders in the establishment of the European Orphan Medicinal Products Regulation. EPPOSI has also been instrumental in working towards societal consensus on matters such as research and innovation, access to medicines, and East-West European collaboration between patient groups. Reports and proceedings are available. Emphasis is put on building consensus positions and policy recommendations on human health care matters. In doing so, the Platform ensures timely and effective input into European political debates and hearings (e.g. discussion of EU legislative efforts on orphan medicines, clinical trials, pharmaceutical legislation...) and congresses (e.g. European Society for Human Genetics).
Focus areas include:
Why joining EPPOSI?
EPPOSI is a European Platform and is regularly involved in debates at the European and international levels. EPPOSI is continuously looking for committed individuals who are willing to participate in defining and building consensus on issues in human healthcare.
a. Patient groups
Patient issues are the priorities for EPPOSI. Patient groups are therefore
essential members who can identify issues and propose solutions together with
other EPPOSI stakeholders and bring these solutions constructively to policy
makers in Europe.
b. Academia
Scientific and clinical experts who can convert their expertise into language
that politicians, policy makers and the general public can understand are one of
EPPOSI’s strengths. The involvement of scientists and clinicians in the work of
EPPOSI is of high value, not only because of the need for understanding of
current scientific developments and innovations, but also because they can
contribute pragmatic solutions to the debate.
c. Industry
Representatives of the healthcare industry have a direct interest in joining the
EPPOSI membership since it provides them with an open platform to discuss and
resolve issues with other stakeholders, especially patient groups, researchers
and clinicians, and with government. Indeed, topics such as a pragmatic
regulatory framework, equitable access to and payment for innovative healthcare
products, involvement of European and Member State bodies in healthcare,
healthcare policies and long-term ethical, legal and social trends are all being
discussed amongst EPPOSI members.
d. Sponsors
For sponsors, EPPOSI offers a unique opportunity to participate in the trend now
developing strongly for the future: partnerships between the different
stakeholders in healthcare. Sponsors will have open contact with the most
advanced players in the healthcare field of today and have the opportunity to
interact directly with them.
For more information about EPPOSI or to become a member, contact:
EPPOSI
Giovanni Asta, Director
Giovanni.Asta@epposi.org
Square de Meeűs
Rue de l’Industrie 4
1000 Brussels
Tel. + 32 2 503 13 07
Fax + 32 2 503 31 08