HLRCC Foundation

The HLRCC Foundation is dedicated to patient advocacy, awareness and research in Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC).

Video animation on HLRCC

HLRCC Foundation

The HLRCC Foundation (formerly HLRCC Family Alliance) is dedicated to patient advocacy, awareness and research in Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC).

Video animation on HLRCC

What is HLRCC?

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC)

Hereditary leiomyomatosis and renal cell cancer syndrome (HLRCC) is a genetic condition that affects multiple organs, including the skin, uterus, and kidneys. HLRCC is caused by mutations in the FH gene, which provides instructions for making an enzyme called fumarate hydratase.

Individuals with HLRCC typically develop benign smooth muscle tumors (leiomyomas) on their skin and in their uterus, which can cause significant discomfort. In addition, these individuals are at an increased risk of developing an aggresive form of kidney cancer.

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. Genetic testing can confirm a diagnosis of HLRCC and allow for early detection and management of associated tumors. Detecting kidney cancer early in individuals with HLRCC before it spreads can be life saving.

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How do I test for HLRCC?

HLRCC (Hereditary Leiomyomatosis and Renal Cell Cancer) genetic testing typically involves a blood or saliva sample, which is sent to a laboratory for analysis. Learn how to order an in home genetic test to see if you have HLRCC here.

How do I find a Clinical Care Center (CCC)?

To find a VHL and HLRCC dedicated Clinical Cancer Center (CCC) with a multidisciplinary team experienced in HLRCC, please click here. A list of CCCs are maintained by our partner, the VHL Alliance, and are dedicated to providing specialized care and support to individuals with HLRCC and other related conditions.

How do I enroll in the HLRCC Natural History Study or Seek Expert Guidance at the NIH?

To find out how to reach out to the NIH for expert opinion or to find an expert in HLRCC near you, please click here. The NIH offers a range of resources for individuals and healthcare providers managing HLRCC, including clinical trials and research initiatives aimed at improving outcomes for those affected by the condition.

How do I find a clinical trial?

Clinical trials are critical for advancing the treatment and management of HLRCC. By participating in clinical trials, individuals with HLRCC and variant histology renal cell cancer can potentially access new and innovative treatments. Click here to learn more about ongoing clinical trials for HLRCC and kidney cancer.

I am a patient, where can I find more information?

To learn more about the HLRCC Handbook and other patient-specific resources, please click here. We are committed to providing the most current and comprehensive information to individuals and families affected by HLRCC.

I am a physician, where can I find more information?

For physicians and healthcare providers seeking more information about HLRCC, please click here. We provide a range of resources, including clinical guidelines, expert recommendations, and updates on ongoing research and clinical trials. We are dedicated to supporting healthcare providers in the diagnosis, management, and treatment of HLRCC.

What is new in HLRCC related research and are there grant funding opportunties?

To learn more about current research in HLRCC and grant funding opportunities, please click here

Are there support communities?

The HLRCC Foundation invites members to join our support groups on Facebook, Twitter, and SmartPatients.com. These online communities provide a space for individuals and families affected by HLRCC to connect, share information, and offer support to one another.

How can I donate?

Your contribution can make a difference in improving lives, advancing research, or addressing social issues.

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Real Patients

Share a special tribute to someone you love or let others know about your journey

Advances in Care Help Save Young HLRCC Patient

“This is definitely a knowledge is power situation,” said Ball. He tells HLRCC patients, “It can be taxing logistically to screen every year. It’s also anxiety-provoking. But the tradeoff is, if something does come up and we catch it early, it could be a curable event.”

10 year survivor of metastatic kidney cancer (audio)

“HLRCC is already a rare disease… only about 10, 15% of people who have the genetic defect move on to get kidney cancer. But once you get the kidney cancer, it’s supposed to be a pretty aggressive type of kidney cancer.”

Dr. Cheryl Bahar

“My 10-year-old daughter, Jadyn… underwent surgery on July 3rd, 2015. The tumor was highly cystic and contained solid matter. She was diagnosed with Renal Cell Carcinoma. They equated Jadyn’s cancer to a lightning strike, reassuring us that our other children were not at risk of developing Renal Cell Carcinoma.”

Laura Esfeller

“I was diagnosed with stage IV type 2 papillary renal cell carcinoma a few days after I turned 29 years old. It was a shock, to say the least, and like most cancer patients, I asked myself and my doctors, “Why? Why me?””

Power of Persistence

“My then 23-year-old nephew was experiencing pains in the side of his abdomen… I still remember standing on the beach when the surgeons called and said it was kidney cancer, and that my nephew was scheduled for a radical nephrectomy surgery 2 days later. We took a photo of his body, which we knew would soon have a scar for life.”

Andrew Lee

“I was diagnosed at the age of 19 with a rare kidney cancer known as HLRCC, which currently has no known cure… My GTR has proven to be the closest thing I have to a cure for my cancer. Driving the GTR has become a tremendous outlet for me… I established Driven to Cure, a 501(c)(3) nonprofit organization, to help others and raise awareness for rare kidney cancers.”

A Boxing Champ’s Biggest Fight

While sparing in the gym as a professional boxer, I felt a pain in my left lower abdomen. Assuming it was from boxing, I went to bed, but at 3 AM, the pain intensified, and I could barely breathe. My partner rushed me to the ER, where they suspected a kidney stone… The CT scan revealed an 8.8 cm mass in the upper-middle left kidney consistent with kidney cancer.”

My Battle with Rare Kidney Cancer

“My kidney cancer diagnosis came at the very young age of 27… thinking back it felt unreal that I was in this situation, life and time seemed to stand still…”

Partnerships & Affiliates

We work collaboratively with other aligned organizations to advance research, improve diagnosis and treatment, and promote awareness and education in kidney cancer and hereditary kidney cancer syndromes. Our partnerships help ensure that individuals and families affected by HLRCC and related conditions have access to the resources and support they need.

Sponsors

To become a sponsor of the HLRCC Foundation and support our mission, please click here or contact us directly. We appreciate the support of our current sponsors who help us continue to enrich the lifes of those affected with kidney cancer and HLRCC.