This month we had the chance to interview Dr. Sarah Thomis, a vascular surgeon from Belgium and member of the Pediatric and Primary Lymphedema Working Group (PPL WG). Dr. Thomis tells us how she became involved with VASCERN, what she believes are the greatest accomplishments of VASCERN to date and...
VASCERN Newsletter #40 - May 2020
VASCERN Spotlights: Dr. Sarah Thomis
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New ePAG patient advocate for Pediatric and Primary Lymphedema from Germany
The European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) has another new patient advocate on board: Carina Mainka from Germany! Carina represents the patient association KIF11 Kids… |
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HTAD and COVID-19 webinar recording now available!
Last week, VASCERN held it's first live webinar on Thursday May 14, 2020 on the topic of Heritable Thoracic Aortic Diseases (HTAD) and Covid-19. The recording of the webinar is now… |
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New VASCERN Affiliated Partner from Austria
We are happy to announce that with the last bilateral cooperation agreement signed, our final Affiliated Partner, Medical University Innsbruck, from Innsbruck, Austria, is now officially a member of VASCERN. This… |
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Review of the Vascular Anomalies Working Group’s 2-day Virtual Meeting!
The Vascular Anomalies Working Group (VASCA WG) face-to-face meeting, that was planned to take place in Brussels from April 28th to 29th, 2020 was instead transformed into a 2-day virtual… |
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VASCERN Spotlights: Manuela Lourenço Marques
This month we have the pleasure to interview Manuela Lourenço Marques from Portugal. Manuela is the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Pediatric and Primary Lymphedema Working… |
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New ePAG patient advocate for Heritable Thoracic Aortic Diseases from The Netherlands.
We are happy to announce that Diana Maas has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Heritable Thoracic Aortic Diseases (HTAD). Diana lives in the Netherlands and… |
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VASCERN member’s proposal selected for funding in first EJP RD Research Training Workshop Call!
We are very happy to announce that the proposal "Intranodal Magnetic Resonance Lymphangiography Studies Workshop", submitted by Vascular Anomalies Working Group (VASCA WG) member Dr. Willemijn Klein (from Radboud University… |
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Eurordis Rare Barometer Voices Survey on Rare Disease patients and COVID-19
How has the COVID-19 pandemic affected the lives of rare disease patients? The latest Eurordis’ Rare Barometer Voices survey aims to answer this very question by collecting rare disease patients’… |
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ECRD 2020 to take place online on 14-15 May – Register until May 1st, 2020!
Due to the COVID-19 pandemic, the 10th European Conference on Rare Diseases & Orphan Products (ECRD) will now take place ONLINE on the 14th-15th of May, 2020. The ECRD is recognised globally as the largest, patient-led… |
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Wed03Jun20206:00PM-7:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).
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Thu04Jun2020Fri05Jun2020Videoconference call - Webex
Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).
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Tue09Jun202010:00AM-11:30AM (CET)Zoom
The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).
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Fri12Jun20209:00AM-12:30PM (CET)Videoconference call - Webex
Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).
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Mon15Jun20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on June 15th, 2020 at 5:30 pm (Paris time).
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Wed17Jun20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).
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Wed17Jun20209:00AM-12:00PM (CET)Videoconference call - Webex
Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.
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Mon22Jun20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).
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Thu25Jun20202:00PM-5:00PM (CET)Videoconference call - Webex
Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).
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Wed01Jul20206:00PM-7:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on July 1st, 2020 at 6 pm (Paris time).
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Thu09Jul20202:30PM-3:30PM (CET)Videoconference call - Webex
The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).
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Wed15Jul2020Fri17Jul2020Kartause 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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Wed15Jul20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).
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Mon20Jul20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).
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Mon27Jul20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on July 27th, 2020 at 5 pm (Paris time).
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Sat29Aug2020Wed02Sep2020Amsterdam, The Netherlands
The European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands, from August 29th to September 2nd, 2020.
For more information visit the event's website here.
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Thu01Oct2020Sat03Oct2020Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from October 1-3, 2020.
For more information, check out their website here.
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Thu22Oct2020Sat24Oct2020Paris, France
VASCERN's annual seminar, VASCERN DAYS 2020, will take place this year from October 22-24th, 2020 in Paris, France.
Further details to be announced.
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Sat07Nov2020Sun08Nov2020Paris
Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.
Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).
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.
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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Mon16Nov2020Wed18Nov2020Barcelona, Spain
Due to the COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from November 16th to 18th, 2020 in Barcelona, Spain.
Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA WG), will be one of the speakers!
- Registration deadline: October 19th, 2020
- Abstract submission deadline: October 19th, 2020
- Payment deadline: November 1st, 2020
For more information on this event (programme and registration), take a look here.
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Thu26Nov2020Fri27Nov2020Brussels, Belgium
The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.
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Wed13Jan2021Sat16Jan2021Berlin, Germany
The International Congress Of Research On Rare And Orphan Diseases, co-organized with IRDiRC and EJP-RD, has been postponed due to the COVID-19. The event was due to take place from March 11th to 14th, 2020 and will now take place from January 13th to 16th, 2021.
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Tue01Sep2020
The Call for the Research - 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 dates:
- June 2, 2020 at 14:00 (CEST)
IMPORTANT. This collection date is cancelled due to the COVID-19 outbreak. - September 1, 2020 at 14:00 (CEST)
IMPORTANT. Exceptional extension in comparison to Call text: events may be organised between 6 and 18 months after the application date. - December 1, 2020 at 14:00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
- June 2, 2020 at 14:00 (CEST)
