RBDD International Registry

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International Registry of Rare Bleeding Disorders (RBDs)

 
 
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Last Updated on Wednesday, 16 April 2014 10:35
 
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7th European Conference on Rare Diseases & Orphan Products (ECRD 2014)
 

The European Conference on Rare Diseases & Orphan Products (ECRD) promises to be an enlightening forum for rare disease stakeholders across various disciplines across in European countries. It aims to cover research, development of new treatments, healthcare, social care, information, public health and support.

 

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Last Updated on Wednesday, 16 April 2014 10:35
 
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A dynamic, open-access website on rare coagulation disorders
 
The Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (http://www.rbdd.org/), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.ihtc.org), and the Rare Coagulation Disorders Subcommittee of the National Hemophilia Foundation (NHF), a group appointed by NHF’s Medical and Scientific Advisory Council. 
The Resource Room serves as a platform for promoting international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals.

 

http://www.rarecoagulationdisorders.org

 

Last Updated on Monday, 30 September 2013 21:34
 
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EUCERD Recommendation

 

The European Union Committee of Experts on Rare Diseases (EUCERD) adopted a set of Core Recommendations on Rare Disease Patient Registration and Data Collection at its eighth meeting, held in early June 2013. Rare Disease registries are valuable instruments for increasing knowledge on rare diseases, and for supporting fundamental, clinical and epidemiological research, as well as for post-marketing surveillance of orphan medicinal products and medicines used off-label. For people living with a rare disease, as well as for national competent authorities, registries are instrumental in supporting health and social services planning.

Last Updated on Tuesday, 11 March 2014 14:00 Read more...
 
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Last Updated on Saturday, 21 September 2013 07:08
 

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