Viele Patienten mit Marfan-Syndrom und einigen verwandten Erkrankungen haben Probleme mit ihrer Lunge. Wenn Sie das Marfan-Syndrom haben, ist es wichtig, dass Sie einen Pneumologen (einen Spezialisten für Lungenkrankheiten) aufsuchen, wenn Sie den Verdacht haben, dass Sie Probleme mit Ihrer Lunge haben.
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Teens and Marfan Syndrome
If you were recently diagnosed with Marfan syndrome or if you have known about it for years, there are probably hundreds of thoughts, questions, and concerns rushing through your head. On one hand, there is a whole new world of medical information to learn. On the other hand, there is your life as a teen. […]
Parent Toolkit
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
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.