HLRCC Foundation
The HLRCC Foundation is dedicated to patient advocacy, awareness and research in Hereditary Leiomyomatosis and Renal Cell Cancer (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).
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.
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.
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.
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.
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.
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.
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.
Real Patients
Advances in Care Help Save Young HLRCC Patient
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.