European Conference on Rare Diseases - Lisbon November 27 - 28th 2007

Rapsody project description.

Eurordis and its partners are proud to announce a project offering new services aimed at improving the daily lives of people living with a rare disease.

The overall objectives of Rapsody are to improve the quality of care, information and social services for people living with a rare disease.

The Rare Disease Patient Solidarity Project is committed to:

• offering quality information provided by rare disease help lines throughout Europe helping very isolated persons make contact with others suffering from a similar disease;
• standardising the quality of therapeutic recreation programmes for children and young adults living with a rare disease;
• guiding school professionals on how to accommodate children living with a rare disease within the school curriculum;
• identifying respite care services as well as creating networks for severely disabling rare diseases;
• measuring patients’ expectations on the administration of medical, paramedical and social care, through a pan European survey, tailored to the needs of thirteen specific rare disease networks;
• participating in the European reflection process on national centres of reference and European networks of reference for rare diseases.

Rapsody is the result of this long term commitment with the creation of databases with user friendly internet interfaces, cartographic displays of the services developed by participants, and health policy proposals to European institutions and member states.