Hereditary Leiomyomatosis and Renal Cell Cancer is a very rare genetic condition that was named in 2002. This handbook has been created to help educate and support all those impacted by HLRCC.
Also the HLRCC Handbook Edition 2.0 is available as paperback from Amazon (Link) and as ebook from Smashwords (Link)
The content of the website and Handbook should not be taken nor relied upon as medical advice on how to treat your specific manifestation of this condition. Rather, by providing context and understanding, we hope that the information provided will empower the patient to be a better partner in his or her own care and will facilitate constructive conversations between patient and physician. The information provided is intended to add to, not replace, conversations between a patient and a physician, as the specific details and the patient’s total health situation need to be considered in making the final decisions about treatment.
The HLRCC Family Alliance has added a translation feature developed by Google™ Translate to assist website visitors in understanding information on this website in a variety of foreign languages. Please be aware that Google™ Translate, is a free third party service which the HLRCCFA does not control. It provides automated computer translations that may not give you an exact translation all of the time and that NOT all text may be translated correctly or be translated at all. Also please be aware that when a translation is requested, you will be leaving the HLRCCFA website. When a translation is complete, you assume the risk of any inaccuracies, errors or other problems encountered. The HLRCCFA will NOT be held responsible for any damage or issues that may possibly result from using Google™ Translate.
The HLRCCFA cannot guarantee the accuracy of translations through Google™ Translate so translations should not be considered exact and only used as a rough guide. Only the English version has been reviewed and this English version should always be consulted for important information. Anyone relying on information obtained from Google™ Translate does so at his or her own risk. The HLRCCFA disclaims and will not accept any liability for damages or losses of any kind caused by the use of the Google™ Translate feature.
ContentsMedical, Research and Support Council Supporting the HLRCC Family Alliance c/o VHLA AN OVERVIEW: What is HLRCC?
- Diagnostic Criteria
- Genetic Testing
- Cutaneous Leiomyomas (Skin Bumps)
- Uterine Fibroids
- Renal (Kidney) Tumors
- Magnetic Resonance Imaging (MRI)
- Computed Tomography (CT Scan)
- Positron Emission Tomography (PET)
- Bone Scan
- HLRCC Family Alliance Suggestions From Birth
- Upon HLRCC Diagnosis (At Any Age Greater Than 8)
- For Children at Risk Under 8
- Feedback - You Can Help Us Learn
- HLRCC Family Alliance Website
- Smart Patients
- RareConnect HLRCC Community
- VHL UK/Ireland Charity
- UK KIDNEY CANCER SUPPORT NETWORK
- Kidney Cancer Forums
- Other Sites
- The Natural History Study at the National Institutes of Health
- Phase II Study of Bevacizumab and Erlotinib
- Phase I/II Study of Vandetanib and Metformin
- Phase I Study of the Glutaminase Inhibitor CB-839 in Solid Tumors
- Phase 2 Trial Olaparib with and without AZD1775, AZD5363, and AZD2014 in Treating Patients with Advanced Solid Tumors
- Treatment of Cutaneous Leiomyomas with Botulinum Toxin
- Intravenous Recombinant Human IL-15