HLRCC Foundation
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The HLRCC Foundation (Formerly HLRCC Family Alliance) supports those individuals, and their families, who have been diagnosed with Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Fumarate hydratase–deficient (FH-deficient) renal cell carcinoma (RCC) or Fumarase Deficiency. HLRCC is characterized by uterine fibroids, leiomyomas of the skin and potentially a very aggressive kidney cancer
08/20/2025
A new study by Zhang et al., tested a novel treatment for HLRCC using a combination of two drugs, a programmed cell death 1 protein (PD-1) inhibitor (sintilimab) and a vascular endothelial growth factor receptor–targeted tyrosine kinase inhibitor (VEGFR-TKI; axitinib). This treatment worked well for over half of patients keeping the cancer under control for a median of nearly 20 months. Side effects were mostly mild and manageable, suggesting this combination is a promising new option.
Sintilimab Plus Axitinib for Advanced Fumarate Hydratase–Deficient Renal Cell Carcinoma This nonrandomized clinical trial evaluates the efficacy and safety of sintilimab plus axitinib for treatment of advanced fumarate hydratase–deficient renal cell carcinoma.
07/21/2023
Intersting article about potential new treatments for HLRCC
Genetic variants help uncover potential new treatment pathway in kidney cancer "We are hoping this is something that we can repurpose quickly for those affected by these variants,” says Heather Christofk, PhD.
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C/o VHL Alliance 1208 VFW Parkway//Suite 303
Boston, MA
02132
