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Emergency Preparedness Kit
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
Vascular Ehlers-Danlos Syndrome (VEDS)
Ehlers-Danlos syndrome is a group of connective tissue disorders that are characterized by unstable, hypermobile joints, loose, “stretchy” skin, and tissue fragility. It is caused by a defect in the connective tissue. The fragile tissues and skin and unstable joints found in Ehlers-Danlos syndrome are due to a gene mutation in collagen. What other names […]
Tags: VEDS , Patients & Families
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
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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.