Hereditary Leiomyomatosis and Renal Cell Cancer
HLRCC is a genetic condition that affects the skin, uterus and kidneys.
The HLRCC Foundation is dedicated to patient advocacy, awareness and research in Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC).
HLRCC at a glance
FH
HLRCC is caused by mutations in the FH gene, which provides instructions for making an enzyme called fumarate hydratase.
50%
HLRCC is inherited in an autosomal dominant pattern, which means that an affected individual has a 50% chance of passing the condition on to each of their children.
Early
Detecting kidney cancer early in individuals with HLRCC before it spreads can be life saving.
Start here
How can we help you today?
Understand HLRCC
Plain answers to common questions, the HLRCC Handbook and video resources.
Read the FAQ →
Find a specialist
Our map of physicians and genetic counselors who know HLRCC, plus VHL Alliance care centers.
Open the map →
Research
Current research in HLRCC and grant funding opportunities.
See research →
Community
Connect with other patients and families online, and get our newsletter.
Join us →
Find an HLRCC specialist
Research
Research and news
NIH study
How do I enroll in the HLRCC Natural History Study?
How to reach the NIH for expert opinion, and how to take part in research on HLRCC.
Enrollment details →
News
A New Standard of Hope: What the NEJM Bevacizumab and Erlotinib Trial Means for HLRCC Kidney Cancer
Read the article →
Clinical trials
How do I find a clinical trial?
Clinical trials are critical for advancing the treatment and management of HLRCC.
Search ClinicalTrials.gov →
Community
You are not alone
“This is definitely a knowledge is power situation… if something does come up and we catch it early, it could be a curable event.”
Quoted in “Advances in Care Help Save Young HLRCC Patient,” NIH Record
Real stories
People living with HLRCC, in their own words.
1 of 3
Laura Esfeller
“I was diagnosed with stage IV type 2 papillary renal cell carcinoma a few days after I turned 29 years old…”
Read the story
A Boxing Champ’s Biggest Fight
“The CT scan revealed an 8.8 cm mass in the upper-middle left kidney consistent with kidney cancer.”
Read the story
Dr. Cheryl Bahar
“My 10-year-old daughter, Jadyn… underwent surgery on July 3rd, 2015…”
Read the storySupport our work
Support patient advocacy, awareness and research
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