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*Important

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Hereditary Leiomyomatosis & Renal Cell Cancer Family Alliance



Address

2001 Beacon Street, Suite 208
Boston, Massachusetts 02135 USA

Phone

617-277-5667 ext. 709

800 Number

800-767-4845 ext. 709

Email Address

hlrcc@vhl.org

Description

The purpose of the HLRCC Family Alliance is:

  • To teach patients how to take control of their own health once they are diagnosed.

  • To provide medical professionals with a convenient summary of the latest information available on HLRCC, and how best to manage the health of a patient with HLRCC.

  • To communicate the importance of both screening for kidney tumors and conducting genetic testing for blood-related family members.

  • To offer doctors and patients resources for clinical research, tips for efficient and safe screening, and the most up-to-date information possible regarding current research and statistics for HLRCC.

  • To support those HLRCC families who have a child with Fumarase Deficiency (fumaric aciduria).


Finally, it is our hope that the HLRCC Family Alliance through its web site, its handbook, and Facebook Group will provide you with emotional support. An additional online resource is Inspire where those impacted by HLRCC, VHL, and BHD can exchange information, stories and encouraging words. We encourage you to join and partake. They are wonderful resources!

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