Leiomyomatosis and renal cell cancer, hereditary

Common Name(s)

Leiomyomatosis and renal cell cancer, hereditary, Hereditary Leiomyomatosis and Renal Cell Cancer, Hereditary Leiomyomatosis and Renal Cell Carcinoma, HLRCC

Hereditary leiomyomatosis and renal cell cancer (HLRCC) is a condition that causes benign tumors of smooth muscle tissue in the skin (cutaneous leiomyomas) and in the uterus in females (uterine leiomyomas, or fibroids). The condition also increases the risk of kidney cancer. Signs and symptoms usually begin in adulthood as skin growths appear on the torso, arms, legs, and occasionally on the face. They tend to increase in size and number over time. About 10% to 16% of people with HLRCC develop a type of kidney cancer called renal cell cancer; symptoms of this cancer may include lower back pain, blood in the urine, and/or a mass in the kidney that can be felt by a physician. Some people have no symptoms until the cancer is advanced. HLRCC is caused by mutations in the FH gene and is inherited in an autosomal dominant manner.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Leiomyomatosis and renal cell cancer, hereditary" for support, advocacy or research.

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance

Families, Friends, Physicians, & Researchers working together to improve diagnosis, treatment, & quality of life for people affected by HLRCC

Last Updated: 28 Sep 2013

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VHL Family Alliance

Dedicated to improving diagnosis, treatment, and life quality for individuals and families affected by von Hippel-Lindau disease and funding research to uncover a cure.

Last Updated: 15 Oct 2012

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Leiomyomatosis and renal cell cancer, hereditary" for support, advocacy or research.

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance

Families, Friends, Physicians, & Researchers working together to improve diagnosis, treatment, & quality of life for people affected by HLRCC

http://www.hlrccinfo.org

Last Updated: 28 Sep 2013

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VHL Family Alliance

Dedicated to improving diagnosis, treatment, and life quality for individuals and families affected by von Hippel-Lindau disease and funding research to uncover a cure.

http://www.vhl.org

Last Updated: 15 Oct 2012

View Details

 

General Support Organizations

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General Resources

Updated 9 Nov 2012

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RareConnect Community

Connecting Rare Disease Patients Globally with Language Translation Facility

Updated 17 Apr 2013

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Leiomyomatosis and renal cell cancer, hereditary" returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Leiomyomatosis and renal cell cancer, hereditary" returned 0 free, full-text review articles on human participants.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Hereditary Leiomyomatosis Renal Cell Cancer - Study of the Genetic Cause and the Predisposition to Renal Cancer
 

Status: Recruiting

Condition Summary: Renal Tumor Histology; Cutaneous Leiomyomatosis; Kidney Cancer

 

Last Updated: 10 Oct 2014

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