Haemophilia Society

Haemophilia Society

We are the only UK wide charity for everyone affected by a bleeding disorder: a community of members, supporters and healthcare professionals.

The aim of the service is to enable patients with haemophilia and other bleeding disorders to live as normal a life as possible, ensuring optimum treatment with clotting factor to maintain a bleed free existence where possible, whilst maintaining good joint health and general health.

Objectives

  • To ensure that all patients have access to specialist, comprehensive care.
  • To respond to the complexity and rarity of haemophilia and other bleeding disorders by establishing appropriate adult and paediatric multidisciplinary healthcare systems.
  • To deliver care in a way that aims to minimise the complications of haemophilia and other bleeding disorders including the management of pain, incapacity and physical disability
  • To ensure that the care of patients is as safe as possible, that it conforms to national clinical guidelines and is monitored by objective external clinical audit.
  • To be responsive to the lifelong medical, physical and psychosocial needs of patients with hereditary bleeding disorders and their families.
  • To ensure patients are involved in decisions about their treatment and engaged in service developments and improvements.
  • To provide an environment in which patients (and their parents/carers where appropriate) are able to make informed decisions about treatment and are enabled to become independent throughout their lifetime, thereby minimising disruption to education, work and social activities.
  • To promote the cost effective use of resources available to the service with special reference to clinical management of patients and the nature of service delivery.