HLRCC Foundation

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.

This nonrandomized clinical trial evaluates the efficacy and safety of sintilimab plus axitinib for treatment of advanced fumarate hydratase–deficient renal cell carcinoma.

08/05/2025

HLRCC related tumours lack the enzyme fumarate hydratase (FH) and act very differently at the molecular level compared to other (more common) kidney cancers (RCC). Understanding the special traits of these cancers is critical for accurate diagnosis.

This newly published review article provides details of a study where researchers found different molecular subgroups within FH‑deficient RCC, each with its own potential vulnerabilities that could provide new drug targets.

Armed with this new understanding, the researchers suggest it may be possible to tailor treatments to individual molecular signatures of FH-deficient tumours—which might improve outcomes for patients with HLRCC.

New research has provided a comprehensive molecular understanding of fumarate hydratase-deficient renal cell carcinoma, showing distinct molecular divergence from other renal tumour subtypes. These molecular findings have implications for precision oncology for patients with this rare disease.

07/27/2025

04/04/2025

01/24/2025

Unfortunately POTUS Trump has frozen Cancer Research at the NIH. Even a day in a freeze can do a lot of damage. I am sorry for all of us.

01/15/2025

Here’s an opportunity for any of us from the US as we will be meeting with our elected officials.

https://everylifefoundation.org/rare-advocates/rare-disease-week/?fbclid=IwZXh0bgNhZW0CMTEAAR1kVy7xvoByt3yXugnWusBkWeQdfj2RTQ7kMQLk-RdVxDzmg07iR2h3Sd4_aem_5rNLE7JACU9hMrdmNrohhg

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