La sindrome di Marfan è una malattia genetica potenzialmente letale che causa alterazioni del tessuto connettivo dell’organismo. Conoscere i segni della sindrome di Marfan, avere una diagnosi corretta e ricevere il trattamento necessario può permettere a chi soffre di questa sindrome di condurre una vita lunga e soddisfacente.
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Recommended Criteria for Development of a Marfan Clinic
The diagnosis, evaluation, and management of Marfan syndrome and related conditions require health practitioners from multiple disciplines with specialized knowledge, skills, and experience in heritable disorders of connective tissue. Patients and families are best served in clinics with demonstrated interest and expertise in this field.
Tags: All , Healthcare Professionals
Planification Familiale Et Grossesse
Les décisions relatives à la planification familiale peuvent être difficiles et susciter beaucoup d’émotions lorsque l’un des parents potentiels est atteint d’une maladie génétique, comme le syndrome de Marfan. Avant toute décision, les parents doivent connaître les nombreuses options actuellement disponibles ainsi que les risques encourus par l’enfant et la mère. Un conseiller en génétique […]
Tags: Marfan Syndrome , Patients & Families
ACMG Directories
The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
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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.