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 VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

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.

The monthly meeting of this interERN Working Group will take place online on October 6th, 2020 at 10:30 AM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.

Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease!

The meeting, which is specifically for scientists and clinicians, will be virtual, with presentations on-demand beginning September 29, 2020 and live discussions on October 8 and 10, 2020.

The Call for Abstracts for the Aortic Summit is available as well. Abstracts for innovative research and clinical topics related to advancing therapeutic strategies and management should be submitted by September 11. Six abstracts will be chosen for live presentation on Thursday, October 8, from 7:30 - 8:30 pm, during our Cocktails and Posters session. All other abstracts will be available for viewing in our exhibit hall where questions and answers can be posted.

The GenTAC Aortic Summit, a biennual event, originated in 2009 as part of the mission of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Conditions (GenTAC). Its objective are to share current knowledge of the scientific underpinnings of genetic aortic disease; review current best practices related to diagnosis and treatment; and foster scientific and educational exchange.

Professor Guillaume Jondeau (VASCERN coordinator) will give an update of the VASCERN registry during the "Registry Update" session on October 10th, 2020.

For more information and to register for the GenTAC Aortic Summit 2020, please click here.

For the full schedule please click here

Please find the full announcement here

If you have questions, please email GenTAC@marfan.org

The 2nd cross-ERN surgical based Working Group Meeting will take place online on October 9th, 2020 at 4:00 PM (CEST).

The VASCERN MSA-WG Monthly Meeting will be taking place on October 12th, 2020 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on October 13th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday October 15th, 2020 from 3 PM to 4 PM (CET).

The VASCERN PPL-WG Monthly Meeting will take place on October 19th, 2020 at 5:30 pm (Paris time).

Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020.

Further details to be announced.

The VASCERN HTAD-WG Monthly Meeting will take place on October 26th, 2020 at 5 pm (Paris time).

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