Reporter 459, 20 November 2000

‘Neglected’ illnesses tackled by forum

Blood disease experts from all over the country have met in Leeds to discuss how to improve care for people with two life-threatening hereditary disorders.

The University’s Centre for Research in Primary Care, with Leeds and Bradford NHS Trusts, hosted the UK forum on haemoglobin disorders. It brought together practitioners, service managers, policy makers and researchers, as well as sufferers of haemoglobin disorders and their families.

Organiser Dr Karl Atkin said: "By bringing together NHS staff and community groups, we are addressing the long-standing and shameful neglect of haemoglobin disorders. NHS priorities must reflect the needs of those with the illness and their families, rather than regarding them as marginal concerns of little interest to the mainstream."

Sickle cell disorders are more commonly found among Afro-Caribbean people and can cause potentially fatal blockages in small veins and arteries. There are between 12,000 and 18,000 cases in the UK. People with thalassaemia do not produce sufficient red blood cells and are wholly dependent on transfusions. In the UK, about 600 to 800 people, mostly Asian or Greek-Cypriot, have this condition.

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