VASCERN Newsletter #47 - March 2021
VASCERN Spotlights: Hans-Jurgen Mager
This month, we interview Dr. Hans-Jurgen Mager, a pulmonologist from the Netherlands working at St. Antonius Hospital and member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG). Dr. Mager…
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New OJRD publication highlights VASCERN’s eHealth services and main actions
We are very pleased to announce the publication of an article entitled "eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic… |
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VASCERN Spotlights: Hans-Jurgen Mager
This month, we interview Dr. Hans-Jurgen Mager, a pulmonologist from the Netherlands working at St. Antonius Hospital and member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG). Dr. Mager… |
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Guest case from Denmark discussed in CPMS
During this month's Vascular Anomalies Working Group (VASCA WG)'s CPMS discussion, a guest case from a Danish Healthcare professional was discussed. The Danish healthcare professional joined 7 VASCA WG members… |
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Events that took place for World Lymphedema Day 2021!
World Lymphedema Day, March 6th, 2021 was celebrated across Europe with a remarkable collaboration among patient associations in Europe. Twenty-seven patient associations collaborated to co-sign a manifest, translated into 11… |
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Recording of the VASCERN webinar: Infections and Lymphedema now available!
The VASCERN webinar: Infections and Lymphedema took place on March 24th, 2021 at 5pm. We had great interest for this webinar, with over 100 people registered! This collaborative webinar, that… |
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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… |
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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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Mon19Apr20215:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on April 19th, 2021 at 5:30 pm (Paris time).
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Wed21Apr20214:00PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on April 21st, 2021 at 4:00 pm (Paris time)
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Fri23Apr20218:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT-WG Monthly Meeting will take place on April 23rd, 2021 at 8 am (Paris time).
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Wed28Apr20215:00PM-6:00PM (CET)Zoom Webinar
VASCERN will hold a webinar on Wednesday April 28th from 5:00-6pm CET on the topic of Classification of Vascular Anomalies with Professor Emir HAXHIJA and Dr. Paolo GASPARELLA from University Hospital Graz, Austria (VASCERN Affiliated Partner) and members of 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 health care professionals - but all interested participants are welcome to attend!
Please register to join here!
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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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Fri30Apr202110:00AM-5:00PM (CET)Videoconference call - Webex
The ERN Coordinators Group Meeting will take place online on April 30th, 2021 from 10 AM to 5 PM (CET).
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Tue11May202110:00AM-11:30AM (CET)Videoconference call - Webex
The VASCERN ePAG Monthly Meeting will be taking place on May 11th, 2021 from 10 am to 11:30 am (Paris time).
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Wed12May20213:00PM-7:00PM (CET)Videoconference call - Webex
The PPL WG Virtual Spring Meeting will take place on Wednesday May 12th, 2021 from 3-7pm (CET).
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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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Wed19May20211:00PM-5:00PM (CET)Videoconference call - Webex
Day 1 of the VASCA WG Spring meeting will take place on Wednesday May 19th from 1-5pm. It will continue on Tuesday May 25th from 2-7pm (day 2).
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Tue25May20212:00PM-7:00PM (CET)Videoconference call - Webex
Day 2 of the VASCA WG Spring meeting will take place on Tuesday May 25th from 2-7pm.
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Thu27May20212:00PM-6:00PM (CET)Videoconference call - Webex
The HTAD WG Virtual Spring Meeting will take place on Thursday May 27th from 2-6pm (CET).
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Mon31May2021
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VASCERN will hold a webinar on Monday May 31st from 6:00-7pm CET on the topic of HHT and the lungs with members of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG): Dr. Hans-Jurgen Mager, Prof. Marco Post, Claudia Crocione (ePAG Co-Chair for HHT) and Christina Graboowski (ePAG Deputy Co-Chair for HHT).
This webinar will include an informative presentation followed by an interactive Q&A session. Registration information coming soon!
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Thu03Jun20212:00PM-6:00PM (CET)Videoconference call - Webex
The MSA WG Virtual Spring Meeting will take place on Monday, June 3rd, from 2-6pm (CET).
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Fri18Jun20219:00AM-1:00PM (CET)Videoconference call - Webex
The HHT WG Virtual Spring Meeting will take place on Friday June 18th, 2021, from 9AM-1PM (CET).
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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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Thu18Nov2021Sat20Nov2021Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from November 18-20th, 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.
See the preliminary programme here.
For more information, check out their website 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.
Deadline to apply: April 26th, 2021
More information here: https://www.ejprarediseases.org/ern-research-mobility-fellowship/
