National Rare Diseases Registry

 

The National Registry of Rare Diseases (RNER), with headquarters in the Rare Disease Research Institute (IIER), Instituto de Salud Carlos III (ISCIII), is a registry of national scope which attempts to collect information of all the persons diagnosed with any of the diseases considered to be rare or of low prevalence.
The database of this registry was named “Registry of Rare Diseases and Sample Bank”, and with this name, it was included in the National Agency for Data Protection by the Instituto de Salud Carlos III in 2005. 

   

RNER-tríptico 2013.jpg

 

Its aim is to provide the necessary information to contribute to the development of new treatments and to the prevention, diagnosis, prognosis and quality of life of rare disease patients and their families. It is also among its aims to increase the knowledge of the needs of people affected by rare diseases in order to improve health and social plans. These aims are based on the combination of two methods: population - registries and patient registries, dully shared and harmonized. It is linked to the National Biobank of Rare Diseases. 

 

 Tríptico RNER2013-ES.pdfTríptico RNER2013-ES.pdf

     

  https://registroraras.isciii.es

Contacto

registro.raras@isciii.es