DHSC launches surveys to understand rare disease community
The Department of Health and Social Care has begun its ‘national conversation’ on rare diseases by developing surveys to understand … read more »
Brexit could harm rare disease research and collaboration
A patient organisation has written an open letter to the UK Health Secretary Matt Hancock and Brexit Minister Michael Gove … read more »
Welsh annual report 2018 on rare diseases
The 2018 Welsh annual report summarises the progress and achievements against the Welsh implementation plan for rare diseases. The key … read more »
FDA releases draft guidance on natural history studies for rare diseases
The US Food and Drug Administration (FDA) has released its proposed guidance to industry, aiming to assist companies in the … read more »
Parliament debates NICE appraisals of rare disease treatments
Last Thursday MPs debated a motion that this House believes that NICE appraisal processes do not properly address the medical … read more »
DHSC publishes 2019 update for rare disease strategy plan
The Department of Health and Social Care (DHSC) has published its 2019 update for the UK strategy for rare diseases. … read more »
National Action Alliance for People with Rare Diseases secures future funding
In Germany, the Association of Research-based Pharmaceutical Companies (VFA) and the Federation of the Pharmaceutical Industry (BPI) have welcomed the … read more »
Brazilian senate examines rare disease laws
The Brazilian senate has released a list of draft laws in relation to access to rare diseases. In July 2018, … read more »
Fraser Institute report – drug-pricing changes will threaten Canadians who suffer from rare diseases
A new study released by the Fraser Institute, an independent, non-partisan Canadian public policy think-tank, shows that the federal government’s … read more »
Draft report on rare diseases in Ireland released
The National Clinical Programme for Rare Diseases (NCPRD) have released a report entitled Draft Model of Care for Rare Diseases. … read more »
