Connect Issues Spring 2021

INTERNATIONAL IMPACT

HISTORIC International Federation of Marfan Syndrome Organizations , co-founding organization in 1992 International Research Symposium on Marfan and Related Conditions, organizing committee for all 10 symposiums held to date in Europe and the US We supported the first major clinical trial on Marfan that included a study site in Belgium that and recruited many international patients Spanish language materials developed in 2013, used in Spanish language countries all over the world 2021 AND THE FUTURE Launching fact sheets in three additional languages: Italian, French, German Launching new website , translatable into 11 languages Canada Walk for Victory (virtual) set for 2020 Global Walk for Victory (virtual) set for 2020 International Research Symposium on Marfan and Related Conditions is planned for 2022 in Europe GenTAC Aortic Summit is planned for 2022 in Europe DEFY Foundation 5 th Scientific Meeting for 2022 in Europe

2019-2020 International E 3 Summit: Educating, Empowering, and Enriching our Community, August-September 2020, featuring 70 presentations in 7 languages, with 3,000 attendees from 75 countries Aortic Disease Awareness Day/Week , lead since 2019 Global Walk for Victory, May 2020, with teams from 8 countries International Patient Organization Meeting in Amsterdam, organizer in 2019 GenTAC Aortic Summit 2020 , international scientific meeting attracted more than 250 registrants from 25 countries First Board Advisor from outside the US (Timo Söderlund, Sweden)

PAST, CURRENT, ONGOING

Our Help & Resource Center regularly fields inquiries from more than 40 countries around the world – from Albania and Algeria to Uzbekistan and Venezuela Our Research Grant program, which has given awards to 15 scientists and clinicians outside the US, continues to provide funding opportunities to advance discovery around the world We are conducting a long-term valve-sparing durability research study with several international sites Our social media platforms connect people from all over the world (45 countries)

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Spring 2021