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: firstname.lastname@example.orgRead more
This is an updated version of the statement shared last week (13/3) regarding coronavirus (COV-19) containing new information.Read more
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.Read more