On 10 November 2022, Together4RD organised an event at the European Parliament to launch their main policy asks to foster collaboration between European Reference Networks (ERNs) and private partners. The event brought together members of the initiative, including ERNs, with stakeholders from the ra...

The state of Michigan has agreed to destroy more than 3 million dried blood spots taken from babies and kept in storage, a partial settlement in an ongoing lawsuit over consent and privacy in the digital age. At the state’s direction, hospitals have routinely pricked the heels of newborns to d...

ISNS, together with IPOPI and ESID founding organisation of Screen4Rare, is pleased to announce Screen4Rare’s launch of the International Neonatal Screening Day (ISND) website (also: INSD2022) We hope you will join INSD2022, this global effort to celebrate, raise awareness, inspire others and ...

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...