Who Are We?
Chances are that if you are reading this page, you or someone you know has been impacted by HLRCC. We are very glad that you are here; to gather information, learn about this condition, and most importantly, to take control of your own, your patient's, or your loved one's health.
If you want a quick overview of HLRCC, Download our "QUICK FACTS" to print and keep handy.
The term HLRCC did not exist a few years ago. The term HLRCC did not exist a few years ago. Previously, this disorder was thought to be two separate conditions , known as Reed’s syndrome or alternately, as “MCUL”. In 2002, clinical researchers linked several benign aspects of the disorder to the possibility of developing kidney cancer. At the same time, others discovered that changes to the FH gene were responsible for all of the disorder’s symptoms - giving rise to the new term HLRCC. Communicating to the outside world about this condition has been slow and arduous, although we are making progress. So far, up to 1000 individuals have been involved in studies regarding this condition, but most likely thousands more individuals are going undiagnosed. In our attempt to protect ourselves and our family members, those of us diagnosed with HLRCC have learned the value of annual screening. If people with HLRCC are going to stay healthy, they have to understand the risks and take action to protect themselves.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!
Thank you for your support and for doing all you can to spread the word about HLRCC. Remember, KNOWLEDGE SAVES.
Julie Haff Rejman, Chair
Antony Horton, Vice Chair
Graham J Lovitt, Vice Chair
Jo Parker, Vice Chair
Vittoria Rollo, Vice Chair
HLRCC Family Alliance
The HLRCC Family Alliance is indebted to the VHL Alliance for their generous financial and administrative support. Although the HLRCC syndrome is not linked to von Hippel-Lindau (VHL), or Birt-Hogg-Dubé (BHD) they are all related on the path to kidney cancer, and the three syndromes have a number of common characteristics.