WRBD - Working group on menorrhagia

 woman_rbd

WRBD web-site

 

 

Working group on menorrhagia and other gynaecological problems in women affected by bleeding disorders

 Bleeding disorders pose important problems for women because of the reduced quality of life caused by limitations in activities and work, and because of the relationship of these disorders to reproductive issues.These problems include excessive menstrual bleeding or menorrhagia, bleeding complications during pregnancy and after delivery and their related complications such as chronic anaemia.
Last Updated on Wednesday, 05 June 2013 08:22
 
Registries and Data Management

Bioinformatics, Registries and Data Management
 
An example of a successful interoperable Internet-based rare disease registry for multiple stakeholder use in dispersed geographic regions
 
An article appearing in Human Mutation describes the successful design and implementation of an Internet-based rare disease registry, delineating how the open source system, interoperable with other networks and systems, has successfully been adopted for specific rare diseases in Australia, enabling clinicians and trial sponsors to efficiently identify patients for specific studies in a secure, privacy protected environment.
Consult the PubMed abstract
 
EUROPEAN HAEMOPHILIA NETWORK

EUHANET is a project aimed at establishing a network of haemophilia centres to work together on a number of related projects to improve the care of European citizens with inherited bleeding disorders.


PARTICIPANTS
The project will be directed from Sheffield in the UK by Dr Mike Makris. There are five associated partners:

  • European Haemophilia Consortium (EHC)
  • European Association for Haemophilia and Allied disorders (EAHAD)
  • University Medical College Utrecht
  • Medical Data Solutions and Services Ltd (MDSAS)
  • and Fondazione IRCCS Ca’ Granda in Milan

In addition 84 centres from 26 countries have already committed to participating and were part of the original funding application.


FUNDING THE PROJECT
Sixty percent of the funding is provided by the European Commission via its Executive Agency for Health and Consumers (EAHC) and the rest will be raised from industry.


PROJECT DURATION
The project started on 1st June 2012 and will continue until 31st May 2015

EUHANETpdf_button(file.pdf)

 
Rare Disease Day 2013

February 28

 

rdd09

 www.rarediseaseday.orgexternal link
Last Updated on Sunday, 17 February 2013 10:58
 
WFH 2012

World Federation of Hemophilia World Congress

 
Date: 8-12 July 2012
Venue: Paris, France
wfh
The WFH World Congress is the single largest event in the WFH calendar, and is very important to the global bleeding disorders community. Every second year doctors, scientists, healthcare workers, people with bleeding disorders and haemophilia organisations gather to learn about the latest developments in bleeding disorders treatment, to discuss, to debate and to contribute to a strong global organization and community. This year’s Congress will feature presentations, workshops, and exhibits on cutting-edge trends in research and treatment for haemophilia and other inherited bleeding disorders.


For further details

 
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