To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance


c/o VHL Family Alliance
2001 Beacon Street, Suite 208
Boston, MA 02135-7787





800 Number


Email Address

[email protected]


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.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.