The results from the latest Rare Barometer Voices survey entitled Rare disease patients’ preferences on data sharing and protection, have now been published on the EURORDIS website via a summary infographic. See the survey results here This survey was completed by 2,013 respondents from 66 countries and provides some interesting …
The Vascular Anomalies Working Group (VASCA WG)‘s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into Swedish. Access it here This means that the pathway is now available in 5 languages: English, German, Italian, Spanish and Swedish (find them all here)! The VASCA WG should also soon be releasing several …
Our first VASCERN Spotlights interview of 2020 is with no other than Pernille Henriksen, our European Patient Advocacy Group (ePAG) co-chair for the Primary and Pediatric Lymphedema Working Group (PPL WG), who joined VASCERN in 2019. Pernille tells us how she became involved with VASCERN, her most memorable moment to …
A new collaborative publication entitled Features of Marfan syndrome not listed in the Ghent nosology – the dark side of the disease has been published in Expert Review of Cardiovascular Therapy. It is co-authored by members of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) including Prof. Julie De …
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 …
