HLRCC Foundation

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HLRCC Family

HLRCC Foundation

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Reed’s Syndrome is one of several rare familial syndromes involving kidney cancer. This is a rare sub-type of kidney cancer named Fumarate hydratase (FH) - deficient renal cell carcinoma (FHdRCC). The HLRCC Foundation’s mission is to provide up-to-date information on the disease to patients and their families and also to clinicians as … Read More

HLRCC Quick Facts

HLRCC stands for Hereditary Leiomyomatosis and Renal Cell Cancer (sometimes Carcinoma). It is also known as Reed’s Syndrome. HLRCC is caused by an … Read More

HLRCC: A rare syndrome that causes cancer…Now What?

"Despite the fact that I’ve had the symptoms for more than twenty years, because this is a rare disease, it went undiagnosed. I wanted to share my story so that maybe if someone out there is dealing with this..." Read More

Latest News

When the website for the HLRCC Family Alliance in 2013  was created the domain hlrcc.org was already taken so we went instead for hlrccinfo.org … Read More

Driven to Cure

Bruce Hatch Lee and son Andrew Lee have created Driven to Cure, a 501(c)(3) nonprofit organisation that has raised over $1,000,000 for … Read More

Clinical Trials

The list of clinical trials and studies is constantly changing and people are advised to seek out the latest information from your medical … Read More

Join Us

For patient and medical support, you can connect with us through the following channels: The Smart Patients online community Our Facebook … Read More

VHL Alliance is a NORD member organization

Last modified: 5th February 2026 @ 2:38 pm
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