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Int. J. Neonatal Screen. 2019, 5(1), 12; https://doi.org/10.3390/ijns5010012

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

Sickle Cell Society, London NW10 4UA, UK
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Received: 31 December 2018 / Revised: 24 January 2019 / Accepted: 25 January 2019 / Published: 29 January 2019
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Abstract

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. View Full-Text
Keywords: sickle cell disorder; patient organisations; patient representatives; service users; sickle cell and thalassaemia screening programme; health policy sickle cell disorder; patient organisations; patient representatives; service users; sickle cell and thalassaemia screening programme; health policy
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
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James, J.; Dormandy, E. Improving Screening Programmes for Sickle Cell Disorders and Other Haemoglobinopathies in Europe: The Role of Patient Organisations. Int. J. Neonatal Screen. 2019, 5, 12.

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Int. J. Neonatal Screen. EISSN 2409-515X Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert
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