Newsletter #53 - November 2021
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VASCERN webinar: Diagnostic and Management Pathway for Lymphatic Malformations
VASCERN will hold a webinar on Wednesday December 15th, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Lymphatic Malformations with Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in… |
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Report from the 10th International Conference of the International Lymphoedema Framework!
The 10th International Conference of the International Lymphoedema Framework (ILF) took place from the 18 – 20 November 2021 in Copenhagen, Denmark. We are happy to report that both the patient advocates as well… |
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Recording of the VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas now available!
The VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas took place on November 23rd, 2021. https://youtu.be/UWQ6RmOxnHo This informative webinar was presented by Dr. Andrea Diociaiuti, Vascular Anomalies… |
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ERN Exchange Programme Newsletter and VASCERN Update!
Due to the COVID-19 pandemic, and the resulting travel restrictions, the ERN Exchange Programme has had a little difficulty in picking up speed, despite the many exchange proposals that have… |
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EURORDIS Photo Awards 2022
Do you have a photo that captures life with a rare disease that you would like to share with the world? Submissions for the EURORDIS Photo Award are now open!… |
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New Pill of Knowledge video gives a Mother’s perspective on Genetic Testing and Primary Lymphedema
A new Pill of Knowledge (PoK) video by the Pediatric and Primary Lymphedema Working Group (PPL WG) has just been released on our Youtube channel! It is entitled Genetic Testing… |
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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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Thu09Dec20214.00PM-5.00PMZOOM Meeting
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).More information and registration here: -
Mon13Dec20215.00PM-6.00PMwebex
The VASCERN MSA-WG Monthly Meeting will be taking place on December 13th, 2021 at 5 pm (Paris time).
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Tue14Dec202110.00AM-11.30AMZOOM WEBINAR
The VASCERN ePAG Monthly Meeting will take place on December 14th, 2021 from 10 am to 11:30 am (Paris time).
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Tue14Dec20215:00 pmWEBINAR
Save the date!
"ERN RARE-LIVER: Update on SARS-COV-2 vaccinations for rare disease patients"More information and details will follow soon.... -
Wed15Dec20215:00PM-6:00PMZoom
VASCERN will hold a webinar on Wednesday December 15th, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Lymphatic Malformations with Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden.
This will be the the second 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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Mon20Dec20215.30PM-6.30PMWEBEX
The VASCERN PPL-WG Monthly Meeting will take place on December 20th, 2021 at 5:30 pm (Paris time).
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Thu23Dec20218.00AM-9.00AMWEBEX
The VASCERN HHT-WG Monthly Meeting will take place on December 23rd 2021 at 8 am (Paris time).
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Tue11Jan202210.00AM-11.30AMZOOM WEBINAR
The VASCERN ePAG Monthly Meeting will take place on January 11th, 2022 from 10 am to 11:30 am (Paris time).
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Mon17Jan20225.30PM-6.30PMwebex
The VASCERN PPL-WG Monthly Meeting will take place on January 17th, 2022 at 5:30 pm (Paris time).
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Wed19Jan20224.00PM-5.00PMwebex
The VASCERN VASCA-WG Monthly Meeting will take place on January 19 th , 2022 at 4:00 pm (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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Mon24Jan20225pm-6.30-pmwebex
The VASCERN HTAD-WG Monthly Meeting will take place on January 24th, 2022 at 5 pm (Paris time).
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Thu10Feb2022Fri11Feb2022Online
On 10-11 February 2022, ERN GENTURIS, the European Reference Network on Genetic Tumour Risk Syndromes, will celebrate its 5-year anniversary with a free online conference.
The conference will feature updates on the ERN GENTURIS tumour predisposition syndromes, reports on special ERN GENTURIS projects and patient perspectives. It will also include a half-day introductory educational session specially aimed at general practitioners.
You can register for the conference via: genturis2022.eu.
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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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Wed04May2022Gliwice, Poland
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.The in-person event will take place on :
May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.
The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution.
The training workshop is free of charge. Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.
Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.
More information and registration here: https://www.ejprarediseases.org/event/endocrine-cancer-a-challenge-in-adults-and-children/ -
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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Tue14Dec2021
The European Joint Programme on Rare Diseases just pre-announced the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients
Topic: Development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases
The call will open on December 14th.
Timetable, contact, and more information here: https://www.ejprarediseases.org/joint-transnational-call-2022/
