RBDD International Registry

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International Registry of Rare Bleeding Disorders (RBDs)

 
 
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Last Updated on Thursday, 09 February 2012 20:35
 
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7th ICORD Tokyo

4-6 February 2012 Convention Hall, University of Tokyo, Japan

VII International Conference on Rare Diseases and Orphan Drugs

A global meeting on international cooperation and public health policies focussing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo.

The themes are:
  • Research
  • Diagnosis
  • Treatment
  • Orphan drugs
  • Health policies on rare diseases and orphan drugs globally
  • Ethical issues and social aspects of rare diseases
  • International networking
  • Patients’ needs

for more information:
http://www.prip-tokyo.jp/icord2012
external link

source: Eurordis
Last Updated on Thursday, 05 January 2012 11:24
 
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Rare Disease Day 2012

February 29

 

rdd09

 www.rarediseaseday.orgexternal link

Last Updated on Tuesday, 03 January 2012 11:28
 
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None of us are protected by statistics.

The fact is that while a disease might be labeled as “rare”, the number of persons in Europe suffering from a rare disease is estimated at over 30 million. Rare diseases do not only affect those diagnosed, but their families, friends, care takers and society as a whole. While one rare disease may affect as few as 1 in 50,000 people, rare disease patients collectively comprise 6 to 8 % of the EU population. These statistics do not seem as comforting.

The European Conference on Rare Diseases and Orphan Products is rare. It is the one event where everyone from patients, to policy makers, healthcare professionals, industry, researchers and academics are given the opportunity to meet, exchange information and ideas and join together in the fight against rare diseases. This event provides a unique platform comprising all rare diseases, across all European nations. With over 100 speakers and countless professionals in attendance, this annual conference covers the latest research, developments in new treatments and information regarding innovations in health care, social care and support at both the European and national levels.

ECRD allows you to be on the front lines in the fight against rare diseases, whether you are a patient, family member, healthcare professional, researcher, or simply an interested citizen. The diseases are rare, but the support doesn’t have to be.

ercd2012
Last Updated on Saturday, 15 October 2011 15:38
 
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general informations for RBD's patients:

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Last Updated on Saturday, 24 September 2011 07:04