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Denmark - Patients and patient associations
I Danmark skønnes det, at ca. 30.000-50.000 danskere lever med en sjælden diagnose. Der er over 800 sjældne diagnoser i Danmark og mere end 6.000 forskellige diagnoser i Europa. EU bidrager til at samle knappe ressourcer om sjældne sygdomme, der er spredt over hele EU, og gør det muligt for patienter og fagfolk at udveksle ekspertise og information. Derfor deltager Danmark i de europæiske referencenetværk (ERN), som er virtuelle ekspertnetværk, der skal gøre det lettere at udveksle viden om komplekse og sjældne sygdomme i EU. Det EU-finansierede projekt ‘Joint Action on Integration of ERNs into National Healthcare Systems’ (JARDIN) arbejder specifikt på at integrere ERN’er i de nationale sundhedssystemer for at gøre behandling og viden om sjældne sygdomme mere tilgængelig for patienter og deres familier.
In Denmark, it is estimated that approximately 30,000-50,000 Danes live with a rare diagnosis. There are over 800 rare diagnoses in Denmark and more than 6,000 different diagnoses in Europe. The EU contributes to pooling scarce resources on rare diseases spread across the EU and enables patients and professionals to exchange expertise and information. Therefore, Denmark participates in the European Reference Networks (ERN), which are virtual expert networks designed to facilitate the exchange of knowledge about complex and rare diseases within the EU. The EU-funded project ‘Joint Action on Integration of ERNs into National Healthcare Systems’ (JARDIN) specifically works on integrating ERNs into national healthcare systems to make treatment and knowledge about rare diseases more accessible to patients and their families.