The Canadian Organization for Rare Disorders (CORD) has launched a campaign for the formal adoption of a Rare Disease strategy in Canada. CORD is calling rare disease patients and Canadians in general to share their support for a rare disease strategy with MPs and provincial representatives and thro...

A new article has been published in the Journal of Community Genetics on the knowledge and attitudes of mothers regarding newborn screening tests in Jordan. The study shows that while most mothers showed positive attitudes toward newborn screening, there remains a lack of knowledge on the procedure...

MetabERN has published a new article in the Frontiers in Endocrinology journal analysing rare disease registries and their evolution from single diseases to ERN Registries. The article reveals that while registries are key instruments to achieve a sufficient sample size for clinical research, to gui...

France has published its programme for the Presidency of the Council of the European Union from 1 January to 30 June 2022. The programme details the priorities and guidelines of the next six months, including in the field of health. On rare diseases, the programme indicates that the French Presidenc...

Rare Disorders NZ has launched a survey to collect data on the impact of rare disorders on the health system of patients. The aim of the survey is to identify the unmet medical needs of patients and to a larger extent, promote more recognition for people living with rare disorders. Patients and care...