General News and updates
Welsh Government statement on testing for Covid-19
Link to an update about accessing Covid-19 testing in Wales.
Advice on safer shopping during Covid-19 in Northern Ireland
Booklet giving advice on how to shop safely during Covid-19 to protect yourself and others.
Eurordis launch Covid-19 survey
Eurordis have launched a survey to better understand the impacts of Covid-19 on the rare disease community.
NICE Covid-19 rapid guidelines
NICE have a section of their website dedicated to new rapid guidelines and evidence summaries. The most important of these to the rare disease community is the guideline on critical care in adults. This was updated following contact from Genetic Alliance UK to clarify that the Clinical Frailty Scale is not appropriate for people below 65 years of age, or in...
New Covid-19 app for Northern Ireland
App for information about Covid-19 including the latest advice and a symptom checker.
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,...