News

Letter from our Chief Executive: Toni Mathieson

Toni Mathieson, NPUK Chief Executive: I wanted to take this opportunity to let our patients, families and supporters know how NPUK is responding to the coronavirus (COVID-19) pandemic...

COVID-19 Webinar (UK LSD Collaborative & Metabolic Support UK)

This is an open call to all patients and families affected by metabolic diseases to submit questions regarding the outbreak of novel coronavirus (COVID-19).

Your questions will be addressed by an expert panel, including Dr Robin Lachmann and Dr Elaine Murphy (Charles Dent Metabolic Unit, National Hospital for Neurology, London). 

Information about how to register will follow. Please submit your questions by noon tomorrow (Wednesday 18th March) to: joanne@metabolicsupportuk.org

INHERITED METABOLIC DISEASE AND CORONAVIRUS (COVID-19): Advice for Patients / Parents / Guardians

This is an updated version of the statement shared last week (13/3) regarding coronavirus (COV-19) containing new information.

NPUK Statement on Coronavirus (COVID-19).

A summary of our current information and advice on the coronavirus outbreak.

Open Letter to Rare Disease Community from Joe Fitzpatrick, Minister for Public Health, Sport and Wellbeing

An open letter to the rare disease community updating on Scotland's position with regard to rare disease. The letter sets out detailed progress with regards to its the three priorities of the Rare Disease Strategic Oversight Group (RDSOG); coordination of care,raising awareness of rare disease amongst health professionals and research.