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

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?

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

HLRCC Facebook group

A space for individuals and families affected by HLRCC to connect and support one another.

Smart Patients community

Share information with others living with HLRCC.

Research updates, events and resources by email.

Support our work

Support patient advocacy, awareness and research

The HLRCC Foundation is a 501(c)(3) nonprofit. Your gift helps patients and families find information, expert care and each other.