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Scarce support changes lives

10 August 2010

Nursing Standard


Patients with rare diseases often feel isolated and can struggle to find information, but nurse specialists can help.

Interdisciplinary care of a neonate with haemophagocytic lymphohistiocytosis

07 November 2017

Nursing Children and Young People

Rare diseases

Haemophagocytic lymphohistiocytosis (HLH) is a rare condition not commonly observed in neonatal units. It poses a challenge to neonatal staff to source expertise and...

A special relationship

28 June 2011

Nursing Standard


Nurse specialists can make a world of difference to patients with rare diseases, who otherwise can struggle to get an accurate diagnosis and appropriate treatment.

Introduction to genetics and genomics:a revised framework for nurses

23 October 2013

Nursing Standard

Art & Science

The genetics education framework for nurses first published in 2003 has been revised to reflect advances in genomic research and technology and its implications for...