Congenital primary lymphedema of Gordon

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Synonyms: VEGFC-related congenital primary lymphedema

A rare primary lymphedema characterized by bilateral painless lower limb swelling present at birth. Prominent veins around the ankles and on the dorsa of the feet dysplastic and upslanting toenails due to edema of the nailbed and subtle dysmorphic facial features (such as high forehead hypertelorism depressed nasal bridge mild bilateral ear dysplasia and short neck) have also been described. The degree of lymphatic impairment is milder than in the otherwise clinically similar Milroy disease as evidenced by slightly less severe lymphedema and significantly more uptake of tracers on lymphoscintigraphy.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on Data version June 2024

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Advocacy Organizations

Collaborative Research Advocacy for Vascular Anomalies Network (CaRAVAN)

As the research-based umbrella organization for all vascular anomalies, we are on a mission to develop a unified network of patients and their families, advocates, researchers, and clinicians who influence research from initial concept and design to patient care delivery

Project FAVA

Project FAVA is a 501(c)(3) non-profit patient advocacy group that promotes awareness of fibro-adipose vascular anomalies, educates patients, their families, and the global community, and provides helpful resources to those with FAVA. Project FAVA also advances research to move the needle towards more effective and less invasive treatment options for FAVA patients.

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Clinical Trials

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