VASCERN Newsletter #35 - December 2019
View this email online
NEWS
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Three New Pills of Knowledge videos on Lymphatic Malformations and Klippel-Trenaunay syndrome now available!
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…
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VASCERN ePAG Co-Chair for HHT, Claudia Crocione, one of the EURORDIS Black Pearl Awardees for 2020!
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…
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Research News: New Publication Examines Cardiovascular Outcome in Loeys-Dietz Syndrome versus Marfan Syndrome
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…
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New Pill of Knowledge from the Pediatric and Primary Lymphedema WG – Lymphedema from a Child’s Perspective
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…
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A look back at VASCERN Days 2019
This year our annual seminar and board meeting, VASCERN Days 2019, travelled to the vibrant city of Brussels, Belgium! The two day seminar took place from November 7-8th at Radisson…
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New VASCERN Affiliated Partner from Austria
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…
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General Patient Pathway for Pediatric and Primary lymphedema now available
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…
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New ePAG patient advocate for Vascular Anomalies
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…
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VASCERN Spotlights: Dr. Michael Frank
During VASCERN Days 2019, we were lucky enough to catch up with Dr. Michael Frank, Co-Chair of the Medium-Sized Arteries Working Group (MSA WG), from Paris, France for a VASCERN…
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New HTAD WG Consensus Statement on screening and management of patients with ACTA2-related vasculopathy published!
We are happy to announce that the position statement by the Heritable Thoracic Aortic Diseases (HTAD) Working Group entitled European reference network for rare vascular diseases (VASCERN) consensus statement for…
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Up-coming events
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18:00-19:00 (CET)WebEx
The VASCERN MSA WG Monthly Meeting will take place on January 8th, 2020 from 6 to 7pm (Paris time).
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10:00-11:30 (CET)Zoom
The ePAG monthly meeting will take place on January 14th, 2020 from 10:00AM-12:00PM
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15:45-17:00 (CET)Videoconference call - Webex
The VASCA Monthly meeting will take place on January 15th, 2020 from 3:45pm to 5pm (Paris time).
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17:30-18:30 (CET)Videoconference call - Webex
The VASCERN PPL WG monthly meeting will take place on January 20th, 2020 from 5:30PM-6:30PM.
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17:00-18:00 (CET)Videoconference call - Webex
The HTAD Monthly meeting will take place on January 27th, 2020 from 5:00pm to 6pm (Paris time).
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8:00-9:00 (CET)Videoconference call - Webex
The VASCERN HHT WG monthly meeting #34 will take place on January 27th, 2019 at 8 am (Paris time).
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18:00-19:00 (CET)WebEx
The MSA WG monthly meeting will take place on February 6th at 6pm.
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10:00 amZoom
The VASCERN ePAG Monthly Meeting will be taking place on February 11th from 10 am to 11:30 am (CET).
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17:30-18:30 (CET)WebEx
The PPL WG monthly meeting will take place on February 17th, 2020 at 5:30 pm (CET).
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15:45-17:00 (CET)WebEx
The VASCA WG monthly meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (CET).
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17:30-19:00 (CET)WebEx
The 9th VASCERN Council meeting will take place on February 19th 2020 from 5:30 pm to 7 pm (CET).
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17:00-18:00 (CET)WebEx
The HTAD WG monthly meeting will be taking place on February 24th from 5pm to 6pm.
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18:00-19:00 (CET)WebEx
The MSA WG monthly meeting will be taking place on March 4th 2020 at 6pm (CET).
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Italy
Synergies for defining domain specific "common data elements" across ERNs is a workshop that will take place on 05-06 March 2020 at the JRC premises in Northern Italy (close to Milan)
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10:00Zoom
The VASCERN ePAG monthly meeting will be taking place on the 10th of March 2020 from 10 am to 11:30 am (CET).
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17:30-18:30 (CET)WebEx
The PPL WG monthly meeting will take place on the 16th of March from 5:30 pm to 6:30 pm (CET).
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15:45-17:00 (CET)WebEx
The VASCA WG Monthly meeting will be taking place on March 18th 2020 from 3:45 pm to 5pm (CET).
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Paris
The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.
For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.
For more information, click here.
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17:00-18:00 (CET)WebEx
The HTAD WG Monthly meeting will take place on January 23rd 2020 from 5pm to 6pm (CET).
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Vancouver, Canada
The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23rd Workshop for the Study of Vascular Anomalies, in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.
The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies. It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field. ISSVA 2020 will provide a multidisciplinary forum for many specialties including – but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.
The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.
More information here
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Stockholm, Sweden
The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.
ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.
The overarching theme for this conference is The rare disease patient journey in 2030.
The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is a proud an Associate Partner of this event.
Submissions for poster abstracts are open until February 10th, 2019. More information here
Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.
For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.
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Helsinki, Finland
The PPL WG face-to-face meeting will take place at Helsinki University Hospital on June 4th and 5th 2020 in Finland.
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Hôpital Louis Pradel, Lyon, France
The HHT face-to-face meeting will take place on Friday, June 12th 2020 in Lyon, in France.
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Brussels
Prof. Jondeau and Marine Hurard will be attending the ERN Coordinator's Group meeting.
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Kartause Ittingen, Warth
The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.
The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants. A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.
For more information, go to their website.
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Brussels
Marine Hurard and Professor Jondeau will be attending the ERN Coordinators Group Meeting.
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