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.

 

 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases