Connective Issues Fall 2023

Beyond the Borders: The Foundation Collaborates with Partners Around the World Marfan, Loeys-Dietz, and VEDS a ff ect people around the world. That’s why the Foundation partners across the globe to provide educational resources, webinars, fact sheets, and our website in 12 languages: Spanish, Italian, German, French, Dutch, Swedish, Portuguese, Suomi (Finnish), Mandarin, Japanese, Hindi, and English.

Throughout its history, the Foundation has provided assistance as requested to volunteer-led groups and other Marfan associations around the world. Now, with a commitment to establish an expanded international presence, including an international federation of stakeholders that would dynamically collaborate, share valuable knowledge, and drive research innovation, we are more committed than ever to dedicate additional resources to helping people live longer and better with genetic aortic and vascular conditions, regardless of where they live. Earlier this year, the Foundation named Eileen Novins Masciale as its first Chief Global Business Development O ffi cer. “While Marfan, Loeys-Dietz, and VEDS a ff ect people similarly, we recognize that attitudes about living with a life-long genetic condition vary country to country. There are also important di ff erences related to access to care, healthcare, and insurance. We want to be able to responsively provide information to a ff ected people and their families, as well as to medical professionals, so that our collaborations outside the US are meaningful and have maximum impact on those living with Marfan, Loeys-Dietz, and VEDS,” said Eileen. “To this end, we want to collaborate with key medical experts and volunteer leaders around the world so that, together, we can be there for this community.” The Foundation is already taking critical steps as an international leader for the Marfan, Loeys-Dietz, and VEDS communities. Among the highlights:

• In June, Eileen and Josephine Grima, PhD, the Foundation’s chief science o ffi cer, attended the First International Loeys-Dietz Research and Patient Education Meeting in Antwerp, Belgium, hosted by Dr. Bart Loeys. There, they met with volunteer leaders, doctors, and researchers on Loeys-Dietz and discussed future opportunities. • In July, the Foundation hosted representatives from DeltaHealth in Shanghai at the 39 th Conference in Chicago. We learned about their expertise as well as the Marfan patient organization in China and brainstormed ways we can work together. • The Foundation’s Third Spanish-Language Summit is planned for January 2024, and additional programs for people who speak Spanish are also in the works. • We are exploring opportunities for additional international patient meetings in Europe in the summer of 2024 in conjunction with research meetings in Norway and the UK. Watch for more international event news, including educational webinars and in-person events, coming soon. If you have any questions or suggestions, please contact Eileen at emasciale@marfan.org.  Marfan Foundation meeting in Chicago in July. Front row: Jigauo Chang, Chinese Marfan Organization, and Michael Weamer, President and CEO, The Marfan Foundation. Back row (left-right): Hartnett Xue, manager of CMO office, May Liu, human resources, Dr. Kaitao Jian, cardiac surgeon, Josephine Grima, PhD, and Eileen Novins-Masciale.

 Dr. Hal Dietz (far left) Dr. Bart Loeys (third from right) Dr. Josephine Grima (front center) and Eileen Novins-Masciale (fourth from left) are pictured with a group at the First International Loeys-Dietz Research and Patient Meeting in Antwerp.

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Fall 2023