VASCERN Newsletter #48 - April 2021
VASCERN Spotlights: Françoise Steinbach
This month we feature Françoise Steinbach, the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Heritable Thoracic Aortic Working Group (HTAD WG), from France. Françoise tells us how she became involved with VASCERN, what people should know about the reality of living with Marfan syndrome and how she hopes…
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Recording of the VASCERN webinar: Classification of vascular anomalies now available!
The first live webinar from our Vascular Anomalies Working Group (VASCA-WG) was held on April 28th, 2021 and focused on the "Classification of vascular anomalies". This webinar started with a… |
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Release of the first issue of the VASCA Magazine!
We are very pleased to announce the release of a brand new publication: the VASCA Magazine! Access it here This magazine was created on the initiative of the European Patient… |
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EJP-RD launches its first free MOOC!
The European Joint Programme on Rare Diseases (EJP RD) has launched its first free MOOC entitled “Diagnosing Rare Diseases: from the Clinic to Research and back"! Register here This MOOC is the result… |
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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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Wed12May20213:00PM-7:00PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Virtual Spring Meeting will take place on Wednesday, May 12th, 2021 from 3pm to 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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Wed19May202112:00PM-5:00PM (CET)Videoconference call - Webex
Day 1 of the VASCERN VASCA-WG Spring Meeting will take place on Wednesday, May 19th, 2021 from 12pm to 5pm (CET). It will continue on Tuesday, May 25th, 2021 from 2pm to 7pm (day 2).
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Tue25May20212:00PM-7:00PM (CET)Videoconference call - Webex
Day 2 of the VASCERN VASCA-WG Spring Meeting will take place on Tuesday, May 25th, 2021 from 2pm to 7pm (CET).
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Thu27May20212:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Virtual Spring Meeting will take place on Thursday, May 27th, 2021 from 2pm to 6pm (CET).
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Fri28May20218:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT-WG Monthly Meeting #46 will take place on May 28th, 2021 at 8 am (Paris time).
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Mon31May20216:00PM-7:00PM (CET)Zoom Webinar
VASCERN will hold a webinar on Monday, May 31st from 6pm to 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 Grabowski (ePAG Deputy Co-Chair for HHT).
This webinar will include an informative presentation followed by an interactive Q&A session.
Register now here
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Tue01Jun2021
The 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 1, 2021 at 14.00 (CEST)
- September 2, 2021 at 14.00 (CEST)
- December 2, 2021 at 14.00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
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Thu03Jun20212:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Virtual Spring Meeting will take place on Monday, June 3rd, 2021 from 2pm to 6pm (CET).
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Wed16Jun20213:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on June 16th, 2021 at 3:45 pm (Paris time).
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Fri18Jun20215:00PM-6:30PM (CET)Videoconference call - Webex
The 14th VASCERN Council Meeting will take place on June 18th, 2021 from 5 PM to 6:30 PM (Paris time).
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Fri18Jun20219:00AM-1:00PM (CET)Videoconference call - Webex
The VASCERN HHT-WG Virtual Spring Meeting will take place on Friday, June 18th, 2021 from 9AM to 1PM (CET).
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Mon21Jun20215:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on June 21st, 2021 at 5:30 pm (Paris time).
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Mon28Jun20215:00PM-6:30PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on June 28th, 2021 at 5 pm (Paris time).
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Thu09Sep2021Fri10Sep2021Nijmegen, the Netherlands
The EJP RD - European Joint Programme on Rare DiseasesAdvances in diagnostic and therapeutic methods for lymph flow abnormalities will take place from September 9-10th, 2021 at Radboud University Medical Center, in Nijmegen, the Netherlands.
"The aim of this workshop is to learn about lymph anatomy and physiology as well as diagnostic and therapeutic options available for rare disease patients with lymph flow disorders (lymphatic malformations, central lymph edema, Noonan syndrome and several others), with a specific attention to the innovative intranodal MR lymphangiography technique. This workshop will be an opportunity for participants to network and get acquainted with each other in order to collaborate in clinical and preclinical research studies involving this technique."
It will be hosted by Dr. Willemijn Klein (Radboud University Medical Center Nijmegen), member of the Vascular Anomalies Working Group (VASCA WG), grant recipient of the first EJP-RD Research Training Workshop Call. Other VASCERN members will also be speakers at this event, including Professor Leo Schultze Kool (VASCA WG Co-Chair) and Dr. Robert Damstra (PPL WG Chair), Dr. Friedrich Kapp (VASCA WG member) and ePAG patient advocate Aaike van Oord (LGD Alliance Europe).
See the Programme here
For more information on the workshop and to apply, click here
Deadline to apply: May 31st, 2021
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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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Tue01Jun2021
The 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 1, 2021 at 14.00 (CEST)
- September 2, 2021 at 14.00 (CEST)
- December 2, 2021 at 14.00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
