VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The European Commission’s EU Protects campaign (#EUProtects) aims to raise awareness of the various ways in which the EU combats global challenges to protect its citizens and their latest video features the European Reference Networks (ERNs)!
Link to the video here
The video features the story of Onni, a Finnish boy, who suffered 20-30 seizures/day due to a rare malformation of the brain and who’s doctor reached out to the ERN for rare and complex epilepsies (EpiCARE) in order to receive advice from the experts of the network on the best treatment for Onni. It provides a wonderful example of how virtual consultations between experts from the ERNs can truly help to improve the care of all patients with rare diseases in the EU. All 23 other ERNs are equally discussing complex cases of rare or low prevalence complex diseases within their specific area of expertise (bone, skin, eyes, metabolic, kidney, heart, pediatric cancers, among the 24 thematic area of expertise) through virtual consultations.
For further information about this case and to learn more about the #EUProtect campaign click here
Read the background document on the video here
“The story aims to introduce readers to the principle of European Reference Networks and the value of the knowledge sharing they enable. Through the story of this particular young patient, audiences will understand that cooperation at an EU level makes a real difference to both patients and their families, as well as to the health professionals that care for them.”
