We are very happy to present our first VASCERN Spotlights article of 2021 featuring Dr. Erik Björck: a clinical geneticist from Stockholm, Sweden and member of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG). Dr. Björck tells us why he enjoys being a clinical geneticist, the challenges of being…
VASCERN Newsletter #45 - December 2020/January 2021
VASCERN Spotlights: Erik Björck
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VASCERN statements concerning SARS-CoV-2 vaccination
With vaccination programs against SARS-CoV-2 already underway across Europe, VASCERN's Rare Disease Working Groups have produced individual statements for their patients when it comes to COVID-19 vaccinations. The following statements… |
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Research News: New HTAD collaborative publication on pregnancy outcomes in thoracic aortic disease
A new collaborative research paper entitled Pregnancy outcome in thoracic aortic disease data from the Registry Of Pregnancy And Cardiac disease has been published in Heart. It is co-authored by members… |
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New VASCERN Pregnancy and Family Planning WG page!
We are happy to announce that VASCERN's newest transversal working group (WG), the Pregnancy and Family Planning WG, now has a dedicated page on our website. Access the Pregnancy and… |
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Six new Pills of Knowledge (PoK) videos by the HTAD WG!
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has been hard at work in order to release six new Pills of Knowledge (PoK) videos, just in time for the… |
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EURORDIS recommendations to achieve a mature ERN system in 2030
In December 2020, EURORDIS and the European Patient Advocacy Group (ePAG) patient advocates published a paper, which reviews the progress achieved so far and presents their vision of a mature… |
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New Pill of Knowledge video on PIK3CA gene mutations and related vascular malformations
A new Pill of Knowledge video from the Vascular Anomalies Working Group (VASCA WG) is now available! Created by Hevas and validated by the VASCA WG, it covers the topic… |
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VASCERN Spotlights: Christina Grabowski
This month we talk to Christina Grabowski, European Patient Advocacy Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany. Christina represents the German… |
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VASCERN submits Month 18 SGA Activity Report and CEF Year 3 proposal this month!
November was a busy month for the VASCERN coordination and project management team with the writing and submission of both our Month 18 Activity Report and the CEF Year 3… |
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Manifesto for European Health Union – Sign to support future rare disease policy
We encourage you to sign the new manifesto for a European Health Union in order to strengthen the call to all Members of Parliaments and European leaders for a better EU role… |
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Mon08Feb20215:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on February 8th, 2021 at 5 pm (Paris time).
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Tue09Feb202110:00AM-11:30AM (CET)Zoom
The VASCERN ePAG Monthly Meeting will be taking place on February 9th, 2021 from 10 am to 11:30 am (Paris time).
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Mon15Feb20215:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on February 15th, 2021 at 5:30 pm (Paris time).
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Wed17Feb20213:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on February 17th, 2021 at 3:45 pm (Paris time).
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Thu18Feb20213:00PM-4:00PM (CET)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday February 18th, 2021 from 3 PM to 4 PM (CET).
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Fri19Feb202111:00AM-12:00PM (CET)Videoconference call - Webex
The 2nd VASCERN Pregnancy Working Group Meeting will take place online on February 19th, 2021 from 11 AM to 12 PM (CET).
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Mon22Feb202110:00AM-12:00PM (CET)Videoconference call - Webex
The monthly meeting of this interERN Working Group will take place online on February 22nd, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.
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Mon22Feb20215:00PM-6:30PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on February 22nd, 2021 at 5 pm (Paris time).
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Tue23Feb20211:30PM-6:30PM (CET)Online
The Rare 2030 Final Conference will take place online on February 23rd, 2021 from 1:30-6:30PM.
It will mark the end of the two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework! An excellent opportunity to learn more about the Rare 2030 recommendations in detail and to learn how to use them for dvocacy, research and development, healthcare and policy work.
Register here
Draft agenda available here
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Wed24Feb2021Online
The EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives. This year, the tenth anniversary special online edition of the EURORDIS Black Pearl Awards will take place during the evening of Wednesday, 24 February 2021.
More information here
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Fri26Feb20218:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT-WG Monthly Meeting #43 will take place on February 26th, 2021 at 8 am (Paris time).
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Sun28Feb2021
Rare Disease Day takes place on the last day of February each year. This year it will take place on Sunday February 28th, 2021!
The main objective of this international event is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
More information here
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Mon15Mar20212:30PM-3:30PM (CET)Zoom
The 4th ERN Transversal Study Group on Pregnancy and Family Planning will take place online on March 15th, 2021 at 2:30 PM (CET).
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Fri09Apr202110:00AM-4:00PM (Eastern)Online
The 4th Scientific Meeting on Vascular Ehlers Danlos Syndrome organised by The DEFY Foundation will be held virtually on April 9th, 2021 from 10:00 am to 4:00 pm Eastern.
This event is powered by The Marfan Foundation and The VEDS Movement.
Key areas of focus will be sharing knowledge in basic, translational and clinical aspects of Vascular Ehlers-Danlos syndrome with the goals of developing research directions for advancing therapeutic strategies, development and/or integration of pioneering concepts and theories and establishing collaborations.
Abstracts are due on February 19th and must be submitted electronically. For the abstract submission, please click here.
Full program and registration will be available on March 1st, 2021.
Registration for the meeting will be free.
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Thu06May2021Sat08May2021Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from May 6-8, 2021 (new dates due to COVID-19).
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 on Saturday, May 8th, 2021.
See the preliminary programme here.
For more information, check out their website here.
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Mon14Jun2021Wed16Jun2021Barcelona, 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 June 14th -16th, 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 - 17 May 2021
ABSTRACT SUBMISSION DEADLINE - 17 May 2021
PAYMENT DEADLINE - 1 June 2021
For more information on this event (programme and registration), take a look here.
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Sun07Mar2021
The third edition of EJP-RD's ‘ERN RD Training and Support Program‘ has been announced! The aim of this program is to fill the gap in the available educational offer on rare diseases research by creating and implementing a comprehensive and cohesive training program for different target groups such as researchers and young clinicians working at institutions that are Full Members or Affiliated Partners of the European Reference Networks (ERNs).
To this end, two main training elements will be delivered:
- Research Training Workshops - now open for applications until March 7th, 2021
- Research Mobility Fellowships for secondments outside the home country - to open in February 2021
For all information on these two calls (including call texts and application forms), visit the EJP-RD page here
