We are happy to inform you that new translations of VASCERN’s Do’s and Don’ts factsheets for the chapter Marfan Syndrome and Related Disorders (by the HTAD-WG) are now available! As a deliverable of one of VASCERN’s Work Packages (Do’s and Don’ts Factsheets: development of guidelines for optimal care of patients …
We are happy to inform you that new translations of VASCERN’s Do’s and Don’ts factsheets for the chapter Pediatric and Primary Lymphedema (PPL-WG) are now available! As a deliverable of one of VASCERN’s Work Packages (Do’s and Don’ts factsheets: development of guidelines for optimal care of patients facing common problems …
The 5th Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day took place on Friday June 7th, 2019 in Paris, France. Professor Guillaume Jondeau, VASCERN and FAVA-Multi coordinator, opened the event in the morning and welcomed the French healthcare professionals and patient advocates in attendance. As members of the French …
This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how she became interested in this rare vascular disease, her involvement in VASCERN and what she believes are the greatest achievements …
The Vascular Anomalies Working Group (VASCA WG) held their face-to-face meeting over two days from May 27th– May 28th, 2019 in Brussels Belgium at the De Duve Institute. The meeting, Chaired by Professor Miikka Vikkula, was attended by 11 of VASCERN’s healthcare professionals from 7 European countries (Belgium, Finland, Germany, …
We are happy to announce that VASCERN’s new European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL-WG) is Pernille Henriksen! “My name is Pernille Henriksen and I have primary lymphedema of the left leg. Primary lymphedema is a rare disease with an estimated prevalence …
The Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) held their face-to-face meeting in Amsterdam on May 14th, 2019. Chaired by Prof. Julie De Backer, the meeting was attended by 19 of VASCERN’s healthcare professionals from 8 EU countries (Belgium, France, Germany, Hungary, Italy, the Netherlands, Sweden and the UK), the …
A new publication, co-authored by Dr. Michael Frank (Medium-Sized Arteries Working Group (MSA-WG) Co-Chair), Prof. Xavier Jeunemaitre and Dr. Salma Adham (members of the MSA WG) and entitled Vascular Ehlers-Danlos syndrome: Long-Term Observational study, has recently been published in the Journal of the American College of Cardiology. Vascular Ehlers-Danlos syndrome (vEDS) …
The 2019 EURORDIS Membership Meeting took place in Bucharest, Romania from May 17-18, 2019. This meeting assembled over 200 representatives of people living with a rare disease. During this event, Eurodis and its over 800 member organisations released a new position paper entitled Achieving Holistic Person-Centred Care to Leave No One …
Eurordis has just published a position paper entitled Achieving Holistic Person-Centred Care to Leave No One Behind. “This paper presents evidence on the unmet everyday needs of people living with a rare disease and their family members (often the main carers), while also offering a synthesis on policy and recommendations …