Chris James, chief executive of the
Haemophilia Society, said: "The fact that most people know little or nothing about bleeding disorders can cause real problems - especially for children.
In 2009, the Paediatric Bleeding Disorders Program at the Health Sciences Centre, Winnipeg, Canada joined a twinning program with the
Haemophilia Society (Delhi) and initiated a four-year partnership.
"
Haemophilia B requires frequent injections, often two to three times a week, causing a major burden on individuals with the disorder," principal investigator Amy Shapiro said, adding that in a Phase I/IIa study, rFIXFc showed the potential to prolong protection from bleeding in severe, previously-treated patients with
haemophilia B.
Management of
haemophilia and its complications in developing countries.
As well as raising funds for the EHC, the Liberate Life Bike Ride also aims to build awareness about
haemophilia and the benefits of an active life for people with the condition.
[27] It is particularly appropriate to use the Delphi method in rare diseases such as
haemophilia for which prospectively generated data might take time or be difficult to collect, and particularly for questions that would be impractical to answer via other forms of research.
Udoh said that
haemophilia was categorised into mild, moderate and severe type, and the common symptoms include; excessive post circumcision bleeding, excessive bleeding from cuts or injury.
No two people with
haemophilia A are the same, and therapy should therefore reflect the characteristics and needs of each individual.
In conjunction, the ISTH Gene Therapy for
haemophilia Steering Committee, led by Flora Peyvandi, MD, PhD and David Lillicrap, MD, was established to survey the global
haemophilia healthcare community, identify unmet educational needs specific to gene therapy in
haemophilia, to design a dynamic educational roadmap to guide the evolution of the gene therapy education programme.
In addition, the study showed that the increased prescription of neuroleptics and anti-depressants demonstrates that anxiety and depression are over-represented in people with
haemophilia and underscores the importance of identifying and managing the broad population including non-frequent healthcare users.
Specialist said,
Haemophilia occurs due to defective genes and currently there is no cure for the condition.