288 top medical experts on Hereditary leiomyomatosis and renal cell cancer across 30 countries and 20 U.S. states, including 146 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants.
- Hereditary leiomyomatosis and renal cell cancer: Hereditary leiomyomatosis and renal cell cancer (HLRCC) is a hereditary cancer syndrome characterized by a predisposition to cutaneous and uterine leiomyomas and, in some families, to renal cell cancer.
- Clinical guidelines are the recommended starting point to understand initial steps and current protocols in any disease or procedure:
- Support Organizations
- Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
c/o VHL Family Alliance
1208 VFW Parkway, Suite 303
Boston, MA 02132
Toll-free: 800-767-4845 ext. 3
Telephone: 617-277-5667 ext. 3
E-mail: hlrcc@vhl.org
Website: http://www.hlrccinfo.org/
- National Uterine Fibroids Foundation
P.O. Box 9688
Colorado Springs, CO 80932-0688
Toll-free: 800-874-7247
Telephone: 719-633-3454
E-mail: info@NUFF.org
Website: http://www.nuff.org
Social Networking Websites
- RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
Organizations Providing General Support
- American Kidney Fund (AKF)
11921 Rockville Pike
Suite 300
Rockville, MD 20852
Toll-free: 866-300-2900
E-mail: helpline@kidneyfund.org
Website: http://www.kidneyfund.org
- National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Toll-free: 800-622-9010
Telephone: 212-889-2210
Fax: 212-689-9261
E-mail: info@kidney.org
Website: https://www.kidney.org/
- The Kidney Foundation of Canada
700-15 Gervais Drive
Toronto Ontario M3C 1Y8
Canada
Toll-free: 800-387-4474
Telephone: 416-445-0373
Fax: 416-445-7440
E-mail: kidney@kidney.on.ca
Website: http://www.kidney.on.ca
- Synonyms: Cutaneous leiomyomata with uterine leiomyomata, of skin hereditary multiple Leiomyoma, multiple cutaneous Leiomyoma, hereditary Leiomyomatosis and renal cell cancer, Multiple cutaneous and uterine leiomyomata 1, Multiple cutaneous and uterine leiomyomatosis, Reed's syndrome
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