Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Reed’s Syndrome is one of several rare familial syndromes involving kidney cancer. This is a rare sub-type of kidney cancer named Fumarate hydratase (FH) – deficient renal cell carcinoma (FHdRCC).
The HLRCC Foundation’s mission is to provide up-to-date information on the disease to patients and their families and also to clinicians as because of its rarity most people are unaware of its existence including clinicians. For updates, follow us on Twitter or Facebook.
The HLRCC Foundation – 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 HLRCC-QUICK-FACTS to print and keep handy.
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 Foundation 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 patients with Fumarate hydratase (FH) – deficient renal cell carcinoma (FHdRCC) which includes sporadic as well as those with HLRCC associated kidney cancer.
- To support those HLRCC families who have a child with Fumarase Deficiency (fumaric aciduria).
Finally, it is our hope that the HLRCC Foundation 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.
Warmly,
HLRCC Foundation Board of Director
President: Dean Elhag, USA
Vice-President: Jason DiCola, USA
Secretary: TBA
Treasurer: TBA
Joshua Mann,MPH., Director of Engagement and Outreach, VHL Alliance, USA
Antony Horton, Ph.D.,Vice Chair HLRCC Foundation, previously Chief Scientific Officer at the International Rett Syndrome Foundation,
Website/Social Media Lead: TBA
HLRCC Foundation Board of Trustees
Chair: Julie Haff Rejman, Colorado, USA
Vice-Chair: Antony Horton Ph.D., UK
Vice-Chair: Graham J Lovitt, UK
Vice-Chair: Jo Parker
Vice-Chair: Vittoria Rollo, Italy
Powerful Patient: Joyce Graff, M.A., Massachusetts, USA
HLRCC Foundation
1-800-767-4845
The HLRCC Foundation is pleased to partner with the following organisations that have synergy in genetic conditions and research.
The HLRCC Foundation is pleased to be strongly associated with Driven to Cure, Inc. (DTC)
“I am personally experiencing the effects of rare kidney cancer (HLRCC) and I have seen the effects on others who are also being treated. More research is needed to help them and their families so institutions (like National Cancer Institute at NIH, Yale Smilow Cancer Center, Georgetown Lombardi Cancer Center, and David Geffen School of Medicine at UCLA) can continue to help those who suffer from rare kidney cancers. With this continued collaboration from these institutions, we are growing closer to new cures.”
-Andrew Lee 2019
The HLRCC Foundation is a project of the VHL Alliance.
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. The upgrade of the website to be smart phone friendly using WordPress was paid for by the VHL UK/Ireland charity. At the same time the domain name and web server was also transferred and paid for by the charity (previously funded by the VHL Alliance).
Last Updated on 31st March 2024 by Graham
