It is estimated that there are more than two million Ukrainian patients with a rare or complex disease.
To facilitate the work of Ukrainian medical doctors in this field, the European Commission has concluded an administrative arrangement with Ukraine that will help facilitate Ukrainian healthcare providers to seek advice on Ukrainian rare or complex disease patients from members of the European Reference Networks (ERNs).
This agreement builds on previous initiatives to support Ukrainian patients with rare diseases and complex conditions who have fled the war and the agreement associating Ukraine with the EU4Health programme. Upcoming grants worth 77.4 million EUR to support the ERNs will cover the period 2023-2027 and include the possibility for the Networks to collaborate with Ukrainian competent authorities and healthcare units, thus contributing to capacity building and best practice sharing with Ukraine.
The ERNs previously launched the #ERNcare4Ua website (accessible in most EU languages, in Ukrainian and Russian) with contact points for each ERN by speciality as well as their list of members in Ukraine Border countries and beyond.
ERN eUROGEN has already signed a Memorandum of Understanding with the International Federation for Spina Bifida and Hydrocephalus (IFSBH) and OMNI-Net Ukraine and is running a series of webinars aimed at clinicians in Ukraine with a view to improving the care of patients with Spina Bifida and Other Dysraphisms (SBoD)
Our full information on how ERN eUROGEN, the ERNs, and the EC are supporting Ukraine can be found here.
