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Welcome to SpainRDR!

Welcome to the SpainRDR website. The Spanish Rare Diseases Registries Research Network-SpainRDR is a project financed by the Institute of Health Carlos III (ISCIII) within the scope of the IRDiRC for the years 2012 to 2014 with 2.4 M €.
 
This project involves all Health Departments of the Autonomous Communities (regions) of Spain, the Spanish Ministry of Health, the Spanish Centre of Reference of People and Families affected by RD (CREER), six Spanish Medical Societies, four research networks, pharmaceutical and biotechnological organizations (ASEBIO, AELMHU and FARMAINDUSTRIA), the Spanish Federation of RD (FEDER) and its foundation (FEDER TELETHON FOUNDATION), and the Institute of Rare Diseases Research (IIER) which acts as a coordinator and leader of the network.
 
SpainRDR aims to build the National Rare Diseases Registry in Spain based on the input of two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research and social and health systems planning.
 


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 The International Rare Diseases Research Consortium (IRDiRC) was launched in April 2011 to foster international collaboration in rare diseases research. IRDiRC will team up researchers and organisations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

 

RARE DISEASE
CONNECT  

RD-Connect is a unique global infrastructure project that links up databases, registries, biobanks and clinical bioinformatics data used in rare disease research into a central resource for researchers worldwide.
European Platform for Rare Diseases Registries

EUROPEAN PLATFORM FOR RARE DISEASES REGISTRIES 

The aim of EpiRare is to prepare a European platform for the registration of rare disease patients and to ensure the quality and best use of the registered data.

Visit EPIRARE > 

  

 

 GLOBAL RARE DISEASES PATIENT REGISTRY DATA REPOSITORY (GRDR)

 
GRDR provides a resource to the Rare Diseases community by collecting the pan-disorder information needed to accelarate research and therapetic advances.
 
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