RBDD International Registry

  • Increase font size
  • Default font size
  • Decrease font size

International Registry of Rare Bleeding Disorders (RBDs)

 
 
  rbdd logo

 

 
Last Updated on Tuesday, 22 May 2012 15:22
 
E-mail Print PDF

 
The European Commission’s new Health in Europe: Information and Data Interface (HEIDI) tool includes a section for rare diseases


Last Updated on Wednesday, 23 May 2012 08:52 Read more...
 
E-mail
Thursday, May 10, 2012 New Orleans, Louisiana

Rare Bleeding Disorders: Clinical Presentation, Diagnosis, and Current Therapeutic Interventions

aspho_peyvandi2012

Optimizing Care for Rare Bleeding Disorders Through
Harmonization of National and International Databases
Flora Peyvandi, MD

Last Updated on Sunday, 13 May 2012 09:47 Read more...
 
E-mail Print PDF

Patients: general RBD's Info

 

Blood coagulation is a process that stops bleeding thanks to the action of several coagulation proteins.
Partial or total deficiency of one of these proteins may lead to bleeding symptoms.
The severity of bleeding manifestations can be classified from mild (e.g. epistaxis, hematuria, gum bleeding and bleeding after surgery) to severe (e.g. life- threatening hemorrages such as central nervous system, gastrointestinal and umbilical cord bleeding. Disabling bleeding such as deep muscle and joint bleedings can also occur.

 

Last Updated on Sunday, 13 May 2012 10:17 Read more...
 
E-mail
 ercd 2012 banner

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 Sunday, 19 February 2012 14:39