Medical Resources

 

The Emerging Genetic Mosaic of Lymphatic & Vascular Malformations

Children's Hospital Boston discusses four syndromes with somatic PIK3ca mutations

 

CLOVES Syndrome at Boston Children's Hospital 

Treatment and diagnostics at Boston Children's Hospital

 

Facilities/Physicians who treat Complex Vascular Anomaly Syndromes
List from National Organization of Vascular Anomalies (NOVA) of US providers

 

Children's Hospital Boston - Vascular Anomalies Center (VAC)
The Vascular Anomalies Center (VAC) at Children's Hospital Boston is a team of 25 physicians—representing 16 medical and surgical specialties—who are experts in the field of vascular anomalies

 

Cincinnatti Children's Hospital - Hemangioma and Vascular Malformation Clinic

Multidisciplinary treatment center for vascular anomalies

 

Questions to ask your Doctor
A comprehensive list of questions to ask your child's doctor/your doctor about CLOVES

 

Guidelines for Imaging Vascular Anomalies
Guidelines for MRI Sequences, MRI, Angiogram and Ultrasounds developed by Children's Hospital Boston

 

Descriptions of types of Vascular Anomalies
In depth look at capillary malformations, venous malformations, arterio-venous malformations (AVM), lymphatic malformations and mixed 

 

What is a Mosaic Illness?
Image and description from the National Institutes of Health (NIH)

 

Spinal Cord Anatomy/Injury -
Description and images from US National Library of Medecine

 

Navigating the Ecosystem of Translational Science (NETS thru Genetic Alliance)
A map and guide developed by Genetic Alliance of the drug development process



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