Connect Issues Fall 2021

INTERNATIONAL OUTREACH MARFAN FACT SHEETS NOW AVA BLE IN FRENCH, GERMAN, AND ITALIAN ILA

The Marfan Foundation is expanding its resources to make them accessible to people who speak

an international audience, with registrants from more than 50 countries. In addition, its regular webinar series on medical and

languages other than English and Spanish. New fact sheets that address the diagnosis and treatment of Marfan syndrome are now available in French, German, and Italian. These cover the following aspects of the condition: diagnosis, basic facts, bones and joins, cardiac surgery, eyes, lungs, skin, teeth, family planning, and physical activity. All are available as a free

quality of life topics, established in 2018, has always attracted people from countries near and far.

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MARFAN SYNDROME: THE BASIC FACTS

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Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. Knowing the signs of Marfan syndrome, getting a proper diagnosis, and receiving the necessary treatment can enable people with Marfan syndrome to live a long and full life.

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Our community of experts estimates that nearly half of the people who have Marfan syndrome don’t know it.

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Our community of experts estimates that nearly half of the people who have Marfan syndrome don’t know it. Without proper diagnosis and treatment, they are at high risk for an early sudden death. Marfan syndrome affects our connective tissue, which helps to hold the body’s cells and tissues together. It also regulates how our bodies grow. There are also several disorders related to Marfan syndrome that cause people to struggle with the same or similar physical problems, and anyone affected by these disorders also needs an early and accurate diagnosis.

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What are the features of Marfan Syndrome?

Some features of Marfan syndrome are easier to see than others. These include:

• Long arms, legs, and fingers • Tall and thin body type • Curved spine • Sunken or protruding chest • Flexible joints

download from the Foundation’s website: Marfan.org/languages . The English fact sheets and Spanish fact sheets are available online as well. “The new fact sheets underscore the Foundation’s commitment to serving the global community of people with Marfan and other genetic aortic and vascular conditions,” said Timo Söderlund, a Board advisor to the Foundation who lives in Sweden and is a leader in aortic disease awareness worldwide. “By offering materials in French, German, and Italian, as well as in English and Spanish, the Foundation is providing critical resources for more people in Europe, as well as in countries on other continents where these languages may be spoken. This is a significant contribution to the well-being of this patient community.” Creating resources in multiple languages complements the extensive community outreach the Foundation has implemented internationally in the past year. The International E3 Summit, a virtual educational meeting held in August-September 2020, was the largest event in the Foundation’s history, attracting 3,000 people from 75 countries around the world. Medical presentations were given in seven languages so that people could learn from the experts in their native tongue. The Foundation’s 2021 Virtual Annual Conference similarly attracted Marfan.org

Submit questions to our Help & Resource Center: Marfan.org/Ask

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SAVE THE DATE INTERNATIONAL EDUCATIONAL OPPORTUNITIES FOR OUR COMMUNITY The Marfan Foundation is planning two special opportunities for people around the world to learn about Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Save the date for: A virtual educational day featuring presentations on genetic aortic and vascular conditions in Spanish. INTERNATIONAL PATIENT MEETING Sunday, April 24, 2022, Paris What’s New in Genetic Aortic and Vascular Conditions. SPANISH LANGUAGE SUMMIT Saturday, January 22, 2022

Watch for more details on these two events in the coming months.

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Fall 2021