Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
c/o VHL Family Alliance
About Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
The Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance is dedicated to providing patients, family members and medical professionals with up-to-date information on HLRCC. Their mission is to teach patients how to manage their health once they are diagnosed, provide medical professionals with summaries of the latest information available on HLRCC, including information on managing the health of a patient with HLRCC, to communicate the importance of screening for kidney tumors and conducting genetic testing for blood-related family members and to offer doctors and patients resources for clinical research. HLRCC is a very rare condition, caused by an inherited genetic alteration in the fumarate hydratase (FH) gene. HLRCC imay be inherited in an autosomal dominant pattern or as a spontaneous gene mutation. Approximately 10 percent to 16 percent of people with HLRCC develop a type of kidney cancer called renal cell cancer.