Specialised Services for People Living with Rare Diseases

Eurordis observes that specialised services improve the quality of care, of information and of social services and thus are instrumental to the empowerment of people living with rare diseases. Information services and help lines increase access to and information exchange on the diseases patients and carers live with and manage daily. Online communities of patients are vital for the creation of contacts among extremely isolated patients. Therapeutic Recreational Programmes encourage personal development. Respite Care Services give family members and carers downtime.

 

Eurordis makes suggestions in its contribution to ensure the consolidation and sustainability of existing services, and encourages support for the EU-funded RAPSODY project to extend its lifetime and further develop its goals: awareness-raising, exchange of best practices and standards, the pooling of resources. These suggestions include cost/benefit analysis to demonstrate the positive impact on quality of life and health outcomes of specialised services.

 

This Contribution is one of four specific topics addressed in Eurordis’ response to the European Commission’s Public Consultation for the first Commission Communication on Rare Diseases.

 

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases