Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what funding his Department plans to provide to help improve the lives of patients with haemoglobinopathies, including transfusion-dependent β-thalassemia.
The Government published the United Kingdom Rare Diseases Framework in January 2021, outlining the key priorities for rare diseases including improved access to specialist care, treatments and drugs. In October 2019, NHS England specialised commissioning concluded a review of haemoglobinopathy services, which resulted in the development of new Haemoglobinopathy Co-ordinating Centres and the multi-disciplinary National Haemoglobinopathy Panel of clinical experts which aim to improve outcomes for patients with haemoglobinopathies which includes thalassemia patients.