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Sarah Stevens

Sarah Stevens is a Public Health Consultant working within the National Disease Registration Division at Public Health England. Her main focus of work is establishing a national congenital anomaly and rare disease registration service for England. She is also PHE’s lead for the national Patient Information Portal pilot, a partnership project working with Cancer Research UK and brain tumour charity, brainstrust. This innovative project provides cancer patients access to the records held about them by the National Cancer Registration Service (NCRS) through an online, secure portal.

Prior to joining PHE Sarah worked as a Consultant in Public Health in a local authority and as screening lead for the East of England Strategic Health Authority.

The Patient Portal: offering cancer patients access to their own records

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The National Cancer Registration Service (NCRS) collects information about every patient diagnosed with a malignant tumour in England. You can read our blog on the importance of using this data. Now, through an innovative project, patients can also access this …

How can we make a contribution to work on rare diseases?

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The 28 February 2015 marks the 8th International Rare Disease Day, the aim of which is to raise awareness amongst policy makers and the public about rare diseases and their impact on patients' lives. There are over 6000 recognised rare conditions and in …

Fighting congenital anomalies and rare diseases with information

We hear a great deal about the common illnesses that affect many people such as heart disease, diabetes and cancer. However, we hear much less on rare diseases, each of which affects relatively small numbers of people. Nevertheless, if you …