SEVENTH WORKSHOP ON PARTNERING FOR RARE DISEASE THERAPY DEVELOPMENT
Madrid, 26-27 October 2006
“Positioning Rare Diseases on the Healthcare Agenda”

The European Platform for Patients' Organisations, Science and Industry (EPPOSI) will hold its "Seventh Workshop on Partnering for Rare Disease Therapy Development" at the Spanish Ministry of Labour and Social Services IMSERSO, Calle Ginzo de Limia 58) in Madrid on October 26-27 of this year. Spain has always expressed a keen and special interest in rare diseases. Recently, the Spanish Senate has unanimously approved the creation of a special Working Group on this subject. In 2007, with the full support of the Spanish Ministry of Labour and Social Services, the first medico-social Center of Reference for patients with rare diseases in the city of Burgos will open. Thereby, the Spanish Government will further contribute to the improvement of the life of patients with rare diseases and their families.

This year’s Workshop will give the opportunity to evaluate 5 years experience of the European Regulation on Orphan Medicinal Products. We hope the Workshop will boost further practical and successful application of this regulation. The sessions will be organized around the following questions:

• How to enable the appropriate assessment of new therapies?

• How to assess the benefit of therapies for patients and their families?

• How to enable the development of orphan indications of marketed drugs?

• How to ensure optimal access to treatment?

As with all EPPOSI past and future Workshops on partnering for rare disease therapy development, the aim is to provide a platform for the cultivation of partnerships between industry, patients, academia, together with European authorities, so as to convert policy issues and scientific developments into therapies for rare diseases. All Workshop sessions will feature high-level speakers and experts, representing the different EPPOSI parties and stakeholders, with each session allowing time for an in-depth debate and discussion with selected panel speakers. This year’s Workshop will be the second with an international scope, gathering not only European authorities and stakeholders, but is also supported by both the National Institutes of Health (NIH) and the Food & Drug Administration’s (FDA) Office for Rare diseases. This event follows six successful EPPOSI Workshops in the Federal Parliament in Brussels in September 2000, the French Senate in Paris in October 2001, the Chamber of Deputies of the Italian Parliament in Rome in 2002, and three hosted by ministries in The Hague (2003), Berlin (2004) and London (2005).

The Co-chairs:

Download the Second Announcement as pdf

Workshop’s current sponsors:

Supporting organisations: