2026 Consortium Spotlight

RARE DISEASES CLINICAL RESEARCH NETWORK

Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS

Strengthening research and improving care for people living with vascular malformations, conditions that happen when blood vessels and lymph vessels grow in an abnormal way that causes an immature vessel, which is usually caused by changes in certain genes that control how cells grow and multiply.

Principal Investigators

Lead Institution:
Children's Hospital of Philadelphia
Funded Since: 2025
A photo of Denise Martin Adams
Denise Martin Adams, MD
A photo of Michael R. Jeng
Michael R. Jeng, MD
BY
THE
NUMBERS
Diseases studied icon.
3
Diseases Studied
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8
Clinical Sites

Top Achievement

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Patient Impact Story

A photo of Liz Bovee
"Throughout my journey as a rare disease patient, I have often heard the phrases of how resilient and strong we are as a patient population. While most people intend to utilize these phrases as a positive, there is something that is often missed within these assessments— how isolated you can feel while still belonging to a community."
Liz Bovee, Vascular Malformations (ARDVARC)