Latest news

Rare Diseases International has partnered with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease. This survey aims to identify...

A call is now open to support PhD students, postdocs and medical doctors in training from a Full Member or Affiliated Partner of an ERN to undertake scientific visits fostering specialist research training outside...

On 10 May 2022, it was the first-ever KS/XXY Awareness Day run by the Klinefelter’s Syndrome Association, represented in our European Patient Advocacy Group (ePAG). To celebrate, they have launched a...

Endo-ERN and ERN eUROGEN have endorsed the European Society of Endocrinology‘s declaration ‘Recognizing the Key Role of Hormones in European Health’ (The Milano Declaration) The ESE has been increasingly active in European policy...

The EC has published a study supporting the evaluation of Directive 2011/24/EU to ensure patients’ rights in the EU in cross-border healthcare, a Commission Report on the operation of the directive, and data on patient...

On 3 May 2022, the European Commission launched the European Health Data Space (EHDS), one of the central building blocks of a strong European Health Union, improving healthcare, research, innovation, and policy-making. Thanks...

The EC ERN Office has sent a letter to the Board of Member States for ERNs (BoMS) to encourage their respective Ministries of Health to participate in the Joint Action on...

ERN eUROGEN has now finalised a Memorandum of Understanding (MoU) with the Murdoch Children’s Research Institute in Melbourne, AU, to form a uro-recto-genital collaborative working group on anorectal malformation...

The Innovative Health Initiative (IHI) is launching its first calls for proposal in late June. The IHI is a public-private partnership (PPP) between the European Union and the European...