When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
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Cirugía Para Reparar la Raiz Aortica en el Síndrome de Marfan
La dilatación de la raíz de la aorta es cuando el segmento de la aorta más cercano al corazón se encuentra agrandado. Este es un problema muy serio y muy común para personas con síndrome de Marfan. Con frecuencia el tratamiento para cuando la raíz aortica alcanza cierto tamaño es una cirugía; si la raíz […]
Tags: Marfan Syndrome , Patients & Families
COVID-19 Myths Busted
Professional Advisory Board Member Enid Neptune, MD, Johns Hopkins, addresses some of the myths around COVID-19.
Family Planning and Pregnancy
Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor or the nurse in […]
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.