This month it's Charissa Frank, European Patient Advocate Group (ePAG) Deputy Co-Chair for the Medium-sized Arteries Working Group (MSA WG) from Belgium, who is in the VASCERN Spotlight! Charissa is a patient advocate for both VASCERN and ERN ReCONNECT (European Reference Network on Rare and Complex Connective Tissue and...
VASCERN Newsletter #41 - June/July 2020
VASCERN Spotlights: Charissa Frank
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VASCERN App Version 2 now available for download!
We are very happy to officially announce the launch of the updated version of our mobile app: VASCERN app version 2! In order to start using VASCERN app version 2,… |
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New Position Paper from the Hereditary Haemorrhagic Telangiectasia Working Group on Cerebral Screening in Adults and Children with HHT
A new position paper by the Hereditary Haemorrhagic Telangiectasia working group (HHT WG), entitled European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and… |
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Capillary, Venous and Lymphatic Malformation Patient Pathways now available!
Three new patient pathways have just been released by the Vascular Anomalies Working Group (VASCA-WG) and are now available online! Capillary Malformation Patient Pathway Venous Malformation Patient Pathway Lymphatic Malformation These… |
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Research News: Review Article of Targeted Therapies for Vascular Malformations
A new review article entitled New and Emerging Targeted Therapies for Vascular Malformations has just been published in the American Journal of Clinical Dermatology. It is co-authored by Vascular Anomalies… |
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Recap of the Medium-Sized Arteries Working Group online meeting!
Like all of our Rare Disease Working Groups, the Medium-Sized Arteries Working Group (MSA WG) had to hold their spring face-to-face meeting online. Hosted by MSA WG Chair, Dr. Leema… |
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EJP RD tool for FAIRification of patient registries, made for the VASCA Registry, now available!
A rare disease registry codebook has been created thanks to a joint effort by researchers from Radboudumc and Amsterdam UMC (VASCERN Healthcare Providers (HCPs)). Access the codebook here EJP RD is… |
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VASCERN Partners with The Marfan Foundation for the First-Ever E3 International Summit!
We are very excited to announce that we have partnered with The Marfan Foundation to co-lead the upcoming E3 International Summit: Educating, Empowering, and Enriching Our Community. This three-week online program will… |
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A look back at the Pediatric and Primary Lymphedema Working Group’s 2-day Virtual Meeting!
The Pediatric and Primary Lymphedema Working Group (PPL WG) face-to-face meeting was scheduled in Helsinki but due to COVID-19, it had to be cancelled and was held online from June… |
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Summary of the Hereditary Haemorrhagic Telangiectasia Working Group’s Online Meeting!
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) held a virtual meeting on the morning of June 12th, 2020. Originally scheduled as a face to face meeting in Lyon, France,… |
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Wed19Aug20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).
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Mon24Aug20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).
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Tue25Aug2020Sat12Sep2020Online
VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E3 International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.
CLICK HERE TO REGISTER NOW!
Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.
Highlights include:
- The ABCs of Marfan in six different languages
- Research talks that address recent breakthroughs and hope for the future
- Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
- A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
- Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
- Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
- Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
- Opportunities to connect with other people in the worldwide community through the Summit app
See the full agenda here
For the latest information on this event, visit the event page on the Marfan Foundation website here
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Sat29Aug2020Tue01Sep2020Online
The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.
For more information visit the event's website here.
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Wed02Sep20206:00PM-7:30PM (CET)Videoconference call - Webex
The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).
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Mon14Sep2020Thu17Sep2020Online
The European Joint Programme on Rare Diseases (EJP RD) General Assembly and consortium meeting will exceptionally take place online this year and will run from September 14th to September 17th, 2020.
The agenda and more details will be announced soon!
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Mon14Sep20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).
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Wed16Sep20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).
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Mon21Sep20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).
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Mon28Sep2020Fri02Oct2020Online
An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.
This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/
The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.
Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en
Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf
Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/
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Mon28Sep20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).
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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)
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Thu05Nov2020
The Connecting Europe Facility (CEF) Telecom -2020-2 eHealth call (implemented by The Innovation and Networks Executive Agency (INEA)) was published on June 30th, 2020!
Read the call document here
The actions funded under this call for proposals should contribute to:
- The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
Patient Management System (CPMS), which facilitate access to highly
specialised knowledge and care for patients suffering from rare and complex
diseases. - The improvement of current functionalities and adding of new functionalities to
the ERN Clinical Patient Management System, which will enhance the possibility
to collect and analyse clinical data across borders to support public health and
research, and also better adapt the CPMS to the ERN specific clinical needs. - The promotion of the European Reference Networks within the medical
community by suitable learning and training activities.
Deadline for submission of proposals is Thursday 5 November 2020 (5PM Brussels time).
Evaluation of proposals November 2020 – January 2021 (indicative)
Consultation of the CEF Committee March – April 2021 (indicative)
Adoption of the Selection Decision April 2021 (indicative)
VASCERN will be submitting a proposal in order to ensure the continuation and improvement of the IT services offered to our members (helpdesk, eLearning activities, monitoring system support, and other IT related activities).
A 2020-2 CEF Telecom call virtual Info Day will occur on 16 July 2020.
More information on the call can be found here
- The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
