Hemihyperplasia-multiple lipomatosis syndrome
Hemihyperplasia-multiple lipomatosis syndrome is a rare genetic overgrowth syndrome characterized by non- progressive asymmetrical moderate hemihyperplasia (frequently affecting the limbs) associated with slow growing painless multiple recurrent subcutaneous lipomatous masses distributed throughout entire body (in particular back torso extremities fingers axillae). Superficial vascular malformations may also be associated. Increased risk of intra-abdominal embryonal malignancies may be associated.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version October 2023.
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Hemihyperplasia-multiple lipomatosis syndrome?
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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.
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
For a list of clinical trials in this disease area, please click here.