Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance
c/o VHL Family Alliance, 2001 Beacon Street, Suite 208, Boston, MA 02135-7787
+1-617-277-5667 ext. 709 or +1-888-340-4415 ext. 709
hlrcc@vhl.org
What is it? HLRCC is one of several familial syndromes involving kidney cancer.
Who are we? Click here to read a letter to patients
Kidney Surgery in your future? The Renal SPORE at Dana Farber/Harvard Cancer Center in Boston needs one more HLRCC kidney tumor to perform some important analyses and accelerate their learning about HLRCC. If you are nearing surgery, please call to make arrangements for the tumor to be preserved and transported correctly, so it will be usable for research. Click here to send e-mail
NIH Study. The U.S. National Cancer Institute is recruiting families into studies to enhance knowledge of HLRCC
Click here for info on the HLRCC Clinical Trial for individuals with leiomyoma-related pain
Some scientific papers of interest:
(If you do not have Adobe Acrobat click here for help)
- HLRCC Gene Reviews by Dr. Manop Pithukpakon and Jorge R. Toro
- additional articles of interest
Families with HLRCC are beginning to gather into a family support organization similar to the VHL Family Alliance. If you are interested in connecting with other families affected by HLRCC, please write to hlrcc@vhl.org (Note that we are volunteers and short-staffed. Thus it may take several days to get a reply. If you'd like to help field email messages to this email address or help monitor the Inspire.com message board(below), it would be greatly appreciated)
Or join an HLRCC patient-to-patient message board support group at Inspire.com by clicking here
While the group is not yet formalized and incorporated, it operates with strict rules of confidentiality. Your information will not be disclosed outside the group, and will be used only to provide you with information about the disease and related concerns. The mailing list will not be used for other marketing, and will not be rented nor sold.
Other links of interest:
Cancer.Net(formerly People Living with Cancer)
A list of labs that test for alterations to the FH Gene (but make sure they are CLIA certified)
The HLRCC Family Alliance is gathering funds for our first ever research grant! We have agreed to make a contribution toward a research project being conducted by Dr. Vikas Sukhatme, Chief of the Division of Renal Medicine at Beth Israel Hospital in Boston, who is affiliated with Dana Farber/Harvard Cancer Center and Beth Israel Hospital in Boston. Dr. Sukhatme has published more than 20 articles on kidney cancer. Click here to read the proposal summary.
Note: This page is hosted by the VHL Family Alliance. Genetically, VHL is a condition distinct from HLRCC. They are both hereditary forms of kidney cancer, and there are a number of family issues in common. We welcome visitors with HLRCC at www.vhl.org In fact there may also be a medical link between the two
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