Latest news and updates

Update about the changes to NICE timelines due to prioritisation of Covid-19 related work.

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 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 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...