VASCERN Newsletter #52 - October 2021
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VASCERN Days 2021: annual seminar returns to Paris!
After last year's online VASCERN Days, it was with great pleasure that we were able to welcome our members and invited stakeholders to VASCERN Days 2021 once again in Paris… |
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New Nature Reviews Disease Primer on Primary Lyphedema
A new collaborative review paper on Primary Lymphedema has just been published in Nature Reviews Disease Primers and is co-authored by Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair) and Professor Miikka Vikkula (Vascular Anomalies… |
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Research News: A VASCA WG study on efficacy of sirolimus in patients requiring tracheostomy for life-threatening lymphatic malformations of the head and neck
A new publication entitled Efficacy of Sirolimus in Patients Requiring Tracheostomy for Life-Threatening Lymphatic Malformation of the Head and Neck: A Report From the European Reference Network has just been… |
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New Do’s and Don’ts factsheets on Loeys-Dietz syndrome available!
The Heritable Thoracic Aortic Working Group (HTAD WG) have just released a new series of Do's and Don'ts factsheets on Loeys-Dietz syndrome! Download them here This series of 21 new factsheets… |
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Review of the EJP-RD ERN Workshop on Advances in diagnostic and therapeutic methods for lymph flow abnormalities!
We are happy to report that the EJP RD - European Joint Programme on Rare Diseases ERN Workshop - Advances in diagnostic and therapeutic methods for lymph flow abnormalities took… |
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New Nature Reviews Disease Primer on Marfan syndrome by HTAD WG now online!
A new comprehensive review paper on Marfan Syndrome has just been published in Nature Reviews Disease Primers and is co-authored by our very own Professor Julie De Backer, Professor Guillaume… |
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Guest case from Portugal discussed in the CPMS
After a well deserved summer break, members of the Vascular Anomalies Working Group (VASCA WG) were back on the Clinical Patient Management System (CPMS) last week to discuss a new… |
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VASCERN Registries project update
The VASCERN Registries Project officially launched on May 1st, 2020 and since then much work has been done by our Registry Working Group, the Registry Technical Teams Working Group and… |
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Recording of VASCERN Webinar: On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what’s in a name? now available!
The VASCERN webinar on the topic of "On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what's in a name?" took place on June 30th, 2021. This informative webinar was presented… |
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New Do’s and Don’ts Factsheet on Skin Care & updated Patient Pathway from the Pediatric and Primary Lymphedema Working Group
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have just released two documents this month: a new Do’s and Don’ts factsheet on skin care for PPL and an updated version 2… |
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Mon08Nov20215:00PM-6:00PMWebex
The VASCERN MSA-WG Monthly Meeting will be taking place on November 8th, 2021 at 5 pm (Paris time).
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Mon15Nov20215.30PM-6.30PMWEBEX
The VASCERN PPL-WG Monthly Meeting will take place on November 15th , 2021 at 5:30 pm (Paris time).
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Wed17Nov20214:00PM-5:00PMWebex
The VASCERN VASCA-WG Monthly Meeting will take place on November 17, 2021 at 3:45 pm (Paris time).
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Thu18Nov2021Sat20Nov2021Copenhagen, Denmark
The 10th International Lymphoedema Framework Conference (ILF 2021) will take place in-person from 18 – 20 November 2021 in Copenhagen, Denmark. Online participation will also be possible.
Several VASCERN members will be in attendance including Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair) and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG Chair).
A special Patient Day will also take place on November 20th 2021! Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day.
See the preliminary programme here.
To register, and for all information, go to the conference website here
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Mon22Nov20215:00PM-6:30PMWEBEX
The VASCERN HTAD-WG Monthly Meeting will take place on November 22nd, 2021 at 5 pm (Paris time).
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Tue23Nov20215:00PM-6:00PM (CET)Zoom Webinar
VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas with Dr. Andrea DIOCIAIUTI, VASCA WG member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy.
This will be the the first of a series of four webinars exploring the Patient (Diagnostic and Management) Pathways created by the Vascular Anomalies Working Group (VASCA WG).
This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards physicians who would like to learn more about these pathways in order to improve their knowledge on these rare vascular anomalies – but all interested participants are welcome to attend!
Register here
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Fri26Nov20218:00AM-9:00AMWEBEX
The VASCERN HHT-WG Monthly Meeting will take place on November 26, 2021 at 8 am (Paris time).
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Sat22Jan20228:30AM-17:00PMOnline
Save the date: The Marfan Foundation's Spanish Marfan, Loeys-Dietz and VEDS summit (CUMBRE DE LA FUNDACIÓN MARFAN: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias) will take place online on Saturday, January 22nd, 2022 from 8:30AM-5PM.
VASCERN is proud to be Community Partner of this event. Dr. Arturo EVANGELISTA, Heritable Thoracic Aortic Disease (HTAD WG) Affiliated Partner member, from Hospital Universitari Vall d'Hebron in Barcelona Spain will be one of the presenters at this event, which will be entirely in Spanish.
See the save the date flyer in Spanish here
Registration details to follow soon!
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Sun24Apr2022Paris, France
Save the Date: THE MARFAN FOUNDATION's What’s New in Genetic Aortic and Vascular Conditions - An international educational meeting for affected people and their families will take place Sunday April 24th, 2022 in Paris, France!
Many VASCERN members will be presenting at this event including VASCERN Coordinator and Heritable Thoracic Aortic Disease (HTAD WG) Co-Chair, Professor Gullaume Jondeau, HTAD WG Chair, Professor Julie De Backer, and Professor Bart Loeys (HTAD and MSA WG member).
More information here
Registration coming in 2022!
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Tue10May2022Fri13May2022Vancouver, B.C.
The International Society for the Study of Vascular Anomalies (ISSVA) will be hosting the ISSVA World Congress 2022 (formerly the Workshop) from May 10-13th 2022 in Vancouver, Canada.
The ISSVA World Congress 2022 will provide the opportunity to learn through a multi-disciplinary approach and will be attended by a wide array of specialists such as intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists, pathologists... and more! As usual, many members of the Vascular Anomalies (VASCA) WG will be in attendance at this international event.
More information here
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Thu02Dec2021
The European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!
The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.
Eligible applicants to apply for the NSS are health care professionals, researchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):
Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.
The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.
At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.
Maximum budget for networking event: € 30,000
The NSS is open on a continuous basis. The applications will be collected on the following date:
- December 2, 2021 at 14.00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
