The VASCERN MSA-WG Monthly Meeting will take place on July 13th, 2020 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15^th to July 17^th 2020.

The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.

For more information, go to their website.

The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

• BRIS
• Cybersecurity
• eArchiving
• eHealth 
• eProcurement
• European Digital Media Observatory
• European Platform for Digital Skills and Jobs
• Public Open Data

Register here

For agenda and more information, visit the event page here

The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

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.

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 several languages, including Spanish, Italian, French, and German.

Official announcements here and here.

Full schedule and registration details coming soon!

For the latest information on this event, visit the event page on the Marfan Foundation website here

The European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands, from August 29th to September 2nd, 2020.

For more information visit the event's website here.

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!

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/

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.

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.

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.

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.

The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.

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.

• To see the agenda: click here
• To see the time table: click here
• To register: click here