General News and updates
Covid-19’s impact on SMC’s evaluation of rare disease treatments
SMC (Scottish Medicines Consortium) has had to prioritise elements of its workload due to the Covid-19 crisis. This is to allow for capacity issues arising from social distancing measures, because many members of SMC committees are key workers occupied by the Covid-19 response, and to focus on what the health and social care system will benefit most from at...
Covid-19’s impact on NICE’s evaluation of rare disease medicines
Update about the changes to NICE timelines due to prioritisation of Covid-19 related work.
EURORDIS letter on Covid-19 challenges for people living with rare diseases
EURORDIS has published a new open letter to policy makers setting out the challenges people living with a rare disease are facing during the COVID-19 pandemic. The letter makes specific recommendations and on how policy makers can address challenges in these 7 areas: Access to health care Screening and diagnosis of rare diseases Holistic care,...
NICE Covid-19 rapid guidelines
NICE clarify that Clinical Frailty Scale is not appropriate for people below 65 years of age, or in those with stable long term disabilities or learning disabilities.
EURORDIS alert: Critical care guidelines during Covid-19 pandemic
Eurordis have issued a statement urging policy makers and authorities throughout Europe to take immediate action to protect those living with rare diseases during the COVID-19 pandemic. Eurordis, the European umbrella body for rare disease organisations, is calling for an immediate revision of all triage guidelines that could lead to discrimination against...