HLRCC

Hereditary leiomyomatosis and renal cell cancer (HLRCC) - A rare inherited disorder that increases the risk of developing benign (not cancer) lesions of the skin and the uterus (leiomyomas) and malignant (cancer) tumors of the uterus (leiomyosarcoma) and the kidney. Also called hereditary leiomyomatosis and renal cell cancer syndrome.

Specific Information and Links

1. HLRCC Family Alliance HLRCC Handbook

2. HLRCC Family Alliance Support Group

3. NIH/NCI Hereditary Leiomyomatosis & Renal Cell Cancer

4. NCBI Gene Reviews

5. OMIM Online Mendelian Inheritance in Man on HLRCC

6. Outwit HLRCC’s Pathways

7. HLRCC FH Gene

8. National Organization for Rare Disorders (NORD)

9. Bevacizumab significantly improves survival for Patients with recurrent and metastatic cervical cancer

10. Phase II Study of Bevacizumab (Avastin) and Erlotinib (Tarceva) in Subjects with Advanced HLRCC

11. Vandetanib in Combination with Metformin Trial in People with HLRCC

12. PAZOPANIB used for Renal Cell Carcinoma

13. PAZOPANIB Pediatrics Phase II Trial

14. FDA Approves Opdivo for Frontline RCC

15. FDA approved Opdivo for advanced liver cancer

16. NCI/NIH Dictionary of Cancer Terms

17. The Society for Immunotherapy of Cancer consensus statement on immunotherapy for the treatment of advanced renal cell carcinoma (RCC)

18. HLRCC Family Alliance - Clinical Trials

19. Advances in hereditary leiomyomatosis and renal cell carcinoma (HLRCC) research

20. Fumarate hydratase inactivation in hereditary leiomyomatosis and renal cell cancer is synthetic lethal with ferroptosis induction

21. New Article on Advances In Research for HLRCC

22. After the Diagnosis, Treatment Options for Kidney Cancer

23. Results from a phase II study of bevacizumab and erlotinib in subjects with advanced hereditary leiomyomatosis and renal cell cancer (HLRCC) or sporadic papillary renal cell cancer

24. The Metabolic Basis for Kidney Cancer publication

25. Hereditary leiomyomatosis and renal cell cancer (HLRCC). Renal cancer risk, surveillance and treatment.

26. Pamiparib and Temozolomide for the Treatment of Hereditary Leiomyomatosis and Renal Cell Cancer

27. What age to genetically test your FH gene child and screen with an MRI?

    1. Hereditary leiomyomatosis and renal cell cancer (HLRCC): renal cancer risk, surveillance and treatment

    2. The HLRCC Handbook

    3. PTEN, DICER1, FH, and Their Associated Tumor Susceptibility Syndromes: Clinical Features, Genetics, and Surveillance Recommendations in Childhood

28. Kidney Cancer Impact Alliance

“I am personally experiencing the effects of rare kidney cancer (HLRCC) and I have seen the effects on others who are also being treated. More research is needed to help them and their families so institutions (like National Cancer Institute at NIH, Yale Smilow Cancer Center, Georgetown Lombardi Cancer Center, and David Geffen School of Medicine at UCLA) can continue to help those who suffer from rare kidney cancers. With this continued collaboration from these institutions, we are growing closer to new cures.”
-Andrew Lee

Driven To Cure is in no way an expert on HLRCC or on any other known or unknown rare kidney cancers and is not offering any medical advice by sharing links to information. Simply, Driven To Cure is sharing links to information about HLRCC and other rare kidney cancers for individuals to use for their own research which they might find useful. Everyone should seek their own medical advice from their licensed primary family Doctor and or Genetic Counselor.