HLRCC Foundation

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.

Dissecting the molecular landscape of fumarate hydratase-deficient RCC: towards precision oncology - Nature Reviews Urology 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.

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

Rare Disease Week - EveryLife Foundation for Rare Diseases The EveryLife Foundation has met all of the requirements for Charity Navigator, has met all of the requirements of the National Health Council Standards of Excellence Certification Program®, and has earned the Guidestar Platinum Seal of Transparency.

Some of us with HLRCC get this type of tumor too. They can be hard to find also.

WEDNESDAY!!

Have you had your pheo removed, but still don't feel "right?" Dr. Hans Ghayee joins us on October 4th at 9 AM Pacific/12 PM Eastern to discuss why this might be happening. Don't miss this must-see webinar -- register now to submit your questions and get the link to join the live stream!

https://bit.ly/3RfYCus

Please read you may help yourself or someone you love.

Undiagnosed Diseases Program brings hope to patients with perplexing conditions | Clinical Center Home Page Imagine visiting your doctor and having them tell you they have never seen symptoms like yours in their entire medical career. For thousands of Americans, this is their everyday reality.