GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE")

Clinical trials for GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE") explained in plain language.

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Rare disease mystery: researchers launch global registry to track lymphatic disorders

Knowledge-focused Recruiting now

This study is creating a registry of up to 1,000 people with rare lymphatic anomalies (such as lymphatic malformation, Gorham-Stout disease, and CLOVES syndrome). Researchers will collect information from medical records and annual questionnaires to learn how these conditions pro…

Matched conditions: GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE")

Sponsor: Boston Children's Hospital • Aim: Knowledge-focused

Last updated May 11, 2026 20:40 UTC

GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE")

Get alerted when new GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE") trials appear

Rare disease mystery: researchers launch global registry to track lymphatic disorders