Success of the first ever International E3 Summit!

The first International E3 Summit, powered by The Marfan Foundation and VASCERN has come to an end! This historic event took place from Aug 25 – Sep 12th, 2020 and gathered more than 2,810 registrants from 75 countries for three weeks of education, empowerment and enrichment.

Live educational presentations during the summit covered a wide variety of topics on Marfan syndrome, Loeys-Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (vEDS), and related conditions and featured both renowned healthcare professionals and patient advocates from around the world.

VASCERN was very proud to collaborate with The Marfan Foundation and together we were able to offer presentations in 7 languages (English, Spanish, Italian, French, German, Dutch, Russian) in order to reach a larger audience than ever before! The question and answer sessions, as well as the community message boards featured in the event app, allowed for lively interactions between speakers and attendees.

If you missed the summit you can still register to gain access to the E3 summit’s event app in order to watch all of the sessions, ask questions and connect with the community. Register here!

A very special thank you to members of VASCERN’s Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, both healthcare professionals and patient advocates of the European Patient Advocacy Group (ePAG), who were speakers and gave presentations in the following sessions listed below (click to watch):

• Patient to Patient Support (Spanish) by Elena de Moya Rubio (ePAG Co-Chair for HTAD)

• Patient to Patient Support (Dutch) by Diana Maas (ePAG patient advocate for HTAD)

• ABCs of Marfan/LDS (German) by Dr. Yskert von Kodolitsch (HTAD WG member) and Dr. Michael Borger

• Aortic Measurement by Dr. Gisela Teixido-Tura and Professor Arturo Evangelista (HTAD WG members)

• ABCs of vEDS by Dr. Shaine Morris and Professor Xavier Jeunemaitre (MSA WG member)

• After Cardiac Surgery Care and Management by Professor Guillaume Jondeau (HTAD WG Co-Chair), Professor Julie De Backer (HTAD WG Chair) and Diana Maas (ePAG patient advocate for HTAD)

• Patient-to-Patient Support (German) by Elena de Moya Rubio (ePAG Co-Chair for HTAD)

• Cardiology Rounds by Dr. Mary Roman and Professor Julie De Backer (HTAD WG Chair)

• How to Monitor Aortic Health Before, During and After Pregnancy by Professor Jolien Roos-Hesselink (HTAD and MSA WG member)

• Genetics of vEDS by Dr. Ingrid Van De Laar (HTAD and MSA member)

• Understanding Imaging Modalities Speaker by  Dr. Gisela Teixido-Tura (HTAD WG member)

• Surveillance, Management and Medical Treatment of VEDS by Dr. Michael Frank (MSA WG Co-Chair)

• Patient-to-Patient Support by Diana Maas (ePAG patient advocate for HTAD) and Elena de Moya Rubio (ePAG Co-Chair for HTAD)

• Genetics Testing: Benefits and Limitations (in Italian) by Professor Guglielmina Pepe (HTAD WG member)

• Management of VEDS in Children by Professor Bart Loeys (HTAD and MSA WG member)

• ABCs of Marfan/LDS (French) by Professor Guillaume Jondeau (HTAD WG Co-Chair and VASCERN coordinator)

• A Hidden Danger: Heritable Thoracic Aortic Mutations by Professor Dianna Milewicz, Professor Guillaume Jondeau (HTAD WG Co-Chair and VASCERN coordinator) and Dr. Sinclair Li

• Pre-Implantation Genetics Diagnosis and Pregnancy (VEDS) by Dr. Leema Robert (MSA WG Chair)

• Parent-to-Parent Support for Children with Neonatal Marfan Syndrome (French) by Romain Alderweireldt (ePAG patient advocate for HTAD and VASCERN Ethics WG Chair)

• Living a Life with LDS by Dr. Harry C. Dietz and Professor Bart Loeys (HTAD and MSA WG member)

We thank again The Marfan Foundation for giving us the opportunity to partner with them for such an important and groundbreaking event. We look forward to many new collaborations with them in the future!