Improving Screening Programmes for Sickle Cell Disorders and Other Haemoglobinopathies in Europe: The Role of Patient Organisations

International Journal of Neonatal Screening

Elizabeth Dormandy¹  John James¹ 

[1] Sickle Cell Society, London NW10 4UA, UK;

关键词: sickle cell disorder;    patient organisations;    patient representatives;    service users;    sickle cell and thalassaemia screening programme;    health policy;   

DOI  :  10.3390/ijns5010012

来源: DOAJ

【 摘 要 】

This discussion paper has been written to show the unique contribution and added value that Patient Organisations can give to the development and improvement of newborn screening programmes for sickle cell disorder (SCD) and other haemoglobinopathies in Europe. As an example, the action of the Sickle Cell Society (SCS) in partnership with statutory organisations in the U.K., such as the National Health Service (NHS) Sickle Cell and Thalassaemia Screening Programme (NHS SCT SP), will be described.

【 授权许可】

Unknown