The Medium-Sized Arteries Working Group (MSA WG)‘s patient pathway on vascular Ehlers-Danlos syndrome (vEDS) is now available in Italian! Additional language translations for the vEDS patient pathway are currently being validated by members of the MSA WG and should be published soon. Don’t forget that you can access all of our…
We would like to officially announce that Elena Matta has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Pediatric and Primary Lymphedema (PPL). “I put great efforts into bringing my experience and my network to support patients and their families. I strongly believe that acceptance,…
Three new Pills of Knowledge (PoK) videos from the Vascular Anomalies Working Group (VASCA-WG) have just been published on the VASCERN Youtube Channel! Created by HEVAS (the Dutch Patient organisation for haemangioma and vascular malformations) these PoKs were then revised and validated by the VASCA WG and are an excellent…
The EURORDIS Black Pearl Awardees for 2020 have been announced and we are very happy to see that Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), has been recognised with the EURORDIS Volunteer Award! We congratulate Claudia for this well-deserved recognition and for her invaluable…
A new collaborative publication by members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has just been published in the Journal of Clinical Medicine. It is entitled Case-matched Comparison of Cardiovascular Outcome in Loeys-Dietz Syndrome versus Marfan Syndrome and is co-authored by HTAD WG Chair, Prof. Julie De Backer,…
A new Pill of Knowledge (PoK) video entitled Lymphedema from a child’s perspective is now available! This video was created by andLINFA (The National Association of Sufferers of Lymphatic Disorders – Portugal) and validated by members of the Pediatric and Primary Lymphedema (PPL) Working Group during one of their group…
VASCERN now has its third official Affiliated Partner: Medical University Graz, from Graz, Austria This center will be represented by Dr. Paolo Gasparella and and Dr. Emir Haxhija, pediatric surgeons from the Department of Paediatric and Adolescent Surgery in their centre, who will be bringing their expertise to the Vascular…
We are happy to announce that the General Patient Pathway for Pediatric and Primary Lymphedema (PPL), by our PPL Working Group (WG), is now online! Look at the General Patient Pathway for Pediatric and Primary Lymphedema here You can equally find the pathway on the VASCERN website here or at…
We would like to welcome Aaike van Oord to VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Vascular Anomalies! Aaike is from the Netherlands, and is Chair of both LGD Alliance Europe and the LGD Alliance Nederland. He will be replacing former ePAG advocate Ange van…
