VASCERN Newsletter #46 - February 2021
VASCERN Spotlights: Elena De Moya Rubio
This month we have the pleasure to talk to Elena de Moya Rubio, European Patient Advocacy Group (ePAG) Co-Chair for the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG), from Spain now living in Germany. Elena represents the German Marfan Syndrome Patient Organisation, Marfan Hilfe (Deutschland) e.V., and explains…
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Videos made for Rare Disease Day
Rare Disease Day 2021 took place on 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’… |
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VASCA WG CPMS case discussions continue
The Vascular Anomalies Working Group (VASCA WG) continue to have dedicated CPMS meetings where they discuss a complex clinical case every month. This month six of VASCA WG's healthcare professionals… |
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Research News: VASCA Retrospective Study on Severe adverse events during sirolimus “off-label” therapy for Vascular Anomalies
A new article entitled Severe adverse events during sirolimus “off-label” therapy for vascular anomalies has just been published in the journal Pediatric Blood & Cancer. It is co-authored by Vascular Anomalies Working… |
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VASCERN’s 1st Patient Organisations Meet & Greet
The 1st VASCERN Patient Organisations’ Meet & Greet took place on January 29th, 2021 from 6:30-8pm. This event, hosted by Eurordis, gathered patient advocates and representatives from patient organisations already… |
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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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VASCERN Spotlights: Erik Björck
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… |
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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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Wed10Mar20215:00PM-6:30PM (CET)GoToMeeting
The Internal ERN Coordinators Group Meeting will take place online on March 10th, 2021 at 5:00PM (CET).
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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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Mon15Mar20215:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on March 15th, 2021 at 5:30 pm (Paris time).
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Wed17Mar20213:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on March 17th, 2021 at 3:45 pm (Paris time).
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Thu18Mar20214:00PM-5:00PM (CEST)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday March 18th, 2021 from 4 PM to 5 PM (CET).
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Mon22Mar20215:00PM-6:30PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on March 22nd, 2021 at 5 pm (Paris time).
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Wed24Mar20215:00PM-6:00PM (CET)Zoom Webinar
VASCERN will hold a webinar on Wednesday March 24th from 5:00-6pm CET on the topic of Infections and Lymphedema with Pediatric and Primary Lymphedema Working-Group (PPL-WG) members Dr. Kirsten VAN DUINEN, Dr. Tanja PLANINŠEK RUČIGAJ, Manuela LOURENÇO MARQUES (ePAG Deputy Co-Chair for PPL) and Pernille HENRIKSEN (ePAG Co-Chair for PPL).
Please register to join here!
This webinar will include an informative presentation followed by a Q&A session, featuring questions collected from the PPL patient community! Don't miss it!
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Fri26Mar20218:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT-WG Monthly Meeting #44 will take place on March 26th, 2021 at 8 am (Paris time).
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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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Wed28Apr20215:00PM-6:30PM (CET)GoToMeeting
The Internal ERN Coordinators Group Meeting will take place online on April 28th, 2021 at 5:00PM (CET).
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Thu29Apr202110:00AM-5:00PM (CET)Videoconference call - Webex
The ERN Coordinators Group Meeting will take place online on April 29th, 2021 from 10 AM to 5 PM (CET).
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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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Thu13May2021Sat15May2021Online
The International Society for the Study of Vascular Anomalies (ISSVA) will host virtually a “Debates & Updates” meeting from May 13th to 15th, 2021.
This 3-day online meeting will include talks about genetics, basic research, novel therapies and debates in the evaluation and management of patients with vascular anomalies.
Members of our Vascular Anomalies (VASCA) Working Group will attend this online event and Professor Leo SCHULTZE KOOL, Co-Chair of the VASCA-WG, is the ISSVA Meetings Committee Chair.
Click here to register.
More information about this event here.
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Mon20Sep2021Fri24Sep2021Athens, Greece
The 28th World Congress of Lymphology will take place from September 20th to 24th, 2021 at the Grand Hyatt Hotel in Athens, Greece.
For more information on this event, check out their website here.
If you have any questions or need help, please contact: lymphology@concopco.com
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Wed06Oct2021Fri08Oct2021Barcelona, Spain
Due to 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 October 6-8th, 2021 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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Thu28Oct2021Fri29Oct2021Online
The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.
This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.
The goals for this meeting are:
- To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
- To stimulate new ideas.
- To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
- To identify the gaps and unmet needs for our heterogenous patient populations.
Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.
For more information on this event (abstract submission and registration), take a look here.
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Mon15Mar2021Mon26Apr2021
EJP RD pre-announced the upcoming opening of the call for Research Mobility Fellowships on the 15th of March, which aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out within the same ERN (Full Members and Affiliated Partners), between different ERNs (Full Members and Affiliated Partners) and between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.
Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.
The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.
More information here: https://www.ejprarediseases.org/index.php/training-and-empowerment/ern-trainings/
