Newsletter #22 - September 2018

VASCERN Newsletter #35 - December 2019

View this email online

 


NEWS
image 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…

image 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…

image 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…

image 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…

image 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…

image 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…

image 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…

image 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…

image 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…

image 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…


Up-coming events

  • Wed
    08
    Jan
    2020
    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).

  • Tue
    14
    Jan
    2020
    10:00-11:30 (CET)Zoom

    The ePAG monthly meeting will take place on January 14th, 2020 from 10:00AM-12:00PM

  • Wed
    15
    Jan
    2020
    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).

  • Mon
    20
    Jan
    2020
    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.

  • Mon
    27
    Jan
    2020
    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).

  • Mon
    27
    Jan
    2020
    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).

  • Wed
    05
    Feb
    2020
    18:00-19:00 (CET)WebEx

    The MSA WG monthly meeting will take place on February 6th at 6pm.

  • Tue
    11
    Feb
    2020
    10:00 amZoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 11th from 10 am to 11:30 am (CET).

  • Mon
    17
    Feb
    2020
    17:30-18:30 (CET)WebEx

    The PPL WG monthly meeting will take place on February 17th, 2020 at 5:30 pm (CET).

  • Wed
    19
    Feb
    2020
    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).

  • Wed
    19
    Feb
    2020
    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).

  • Mon
    24
    Feb
    2020
    17:00-18:00 (CET)WebEx

    The HTAD WG monthly meeting will be taking place on February 24th from 5pm to 6pm.

     

  • Wed
    04
    Mar
    2020
    18:00-19:00 (CET)WebEx

    The MSA WG monthly meeting will be taking place on March 4th 2020 at 6pm (CET).

  • Thu
    05
    Mar
    2020
    Fri
    06
    Mar
    2020
    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)

  • Tue
    10
    Mar
    2020
    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).

  • Wed
    11
    Mar
    2020
    Sat
    14
    Mar
    2020
    Berlin, Germany

    The International Congress Of Research On Rare And Orphan Diseases co-organized with IRDiRC and EJP-RD will take place from March 11-14, 2020 in Berlin, Germany.

    • To see the agenda: click here 
    • To see the time table : click here 
    • To register (early registration until November 30th, 2019) : click here 

     

     
  • Mon
    16
    Mar
    2020
    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).

  • Wed
    18
    Mar
    2020
    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).

  • Sat
    21
    Mar
    2020
    Sun
    22
    Mar
    2020
    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.

  • Mon
    23
    Mar
    2020
    17:00-18:00 (CET)WebEx

    The HTAD WG Monthly meeting will take place on January 23rd 2020 from 5pm to 6pm (CET).

  • Tue
    12
    May
    2020
    Fri
    15
    May
    2020
    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

  • Fri
    15
    May
    2020
    Sat
    16
    May
    2020
    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.

  • Thu
    04
    Jun
    2020
    Fri
    05
    Jun
    2020
    Helsinki, Finland

    The PPL WG face-to-face meeting will take place at Helsinki University Hospital on June 4th and 5th 2020 in Finland.

  • Fri
    12
    Jun
    2020
    Hôpital Louis Pradel, Lyon, France

    The HHT face-to-face meeting will take place on Friday, June 12th 2020 in Lyon, in France.

  • Mon
    29
    Jun
    2020
    Tue
    30
    Jun
    2020
    Brussels

    Prof. Jondeau and Marine Hurard will be attending the ERN Coordinator's Group meeting.

     

  • Wed
    15
    Jul
    2020
    Fri
    17
    Jul
    2020
    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.

  • Thu
    26
    Nov
    2020
    Fri
    27
    Nov
    2020
    Brussels

    Marine Hurard and Professor Jondeau will be attending the ERN Coordinators Group Meeting.