HLRCC Handbook

HLRCC Handbook

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.

Click for a web downloadable (English Only) file in pdf format.

Also the HLRCC Handbook Edition 2.0 is available as paperback from Amazon (Link) and as ebook from Smashwords (Link)

Disclaimer

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.

Contents

Welcome Friend

The HLRCC Family Alliance

The HLRCC Family Alliance Leadership

Privacy Policy

Medical, Research and Support Council Supporting the HLRCC Family Alliance c/o VHLA

QUICK FACTS

AN OVERVIEW: What is HLRCC? TYPES OF SCANS SUGGESTED SCREENING GUIDELINES COMMONLY ASKED QUESTIONS

YOUR EMOTIONAL HEALTH

PATIENT and MEDICAL SUPPORT CLINICAL TRIALS EXTENSIVE LIST OF RELEVANT RESEARCH ARTICLES

BACKGROUND of the TERM "HLRCC"

FUMARASE DEFICIENCY

HOW DO CHANGES IN DNA CAUSE CHANGES IN FUMARASE? GLOSSARY: Definitions of Commonly Used HLRCC Terms

HANDOUTS for PRINTING

Family Letter (to send to relatives of someone recently diagnosed with HLRCC)

 

Copyright © 2004 - 2017 Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC)Family Alliance
c/o VHL Alliance, 1208 VFW Parkway // Suite 303, Boston, MA 02132
+1-617-277-5667 ext. 3 or +1-800-767-4845, ext. 3 hlrcc@vhl.org

Last modified: March 23 2017 16:56:46.