Heriditary Leiomyomatosis and Renal Cell Cancer (HLRCC)
Fact Sheet
- Those with HLRCC are at risk for developing a type of kidney cancer that can be very dangerous
- You can be diagnosed with HLRCC if you have uterine fibroids and cutaneous leiomyomas (skin bumos) confirmed by a dermatologist’s biopsy.
- You can also be diagnosed with a genetic test.
- Screening for HLRCC kidney tumours is essential
- Right now it is recommended that individuals with HLRCC are screened once per year with an MRI with contrast
- HLRCC tumours can metastasise very quickly so catching them early is essential.
- The known prevalence of HLRCC is about 1500 patients worldwide.
- However it is believed the condition is very under-diagnosed
Information
Learn more at www.hlrccinfo.org
The HLRCC Family Alliance is a project of the International VHL Alliance and actively supports HLRCC patients and their families through its website hlrccinfo.org/, Facebook Page and Smart Patients.
In addition, there is a private Facebook Group with over 850 members world-wide https://hlrccinfo.org/facebook/
In order to receive an invitation, email admin@hlrccinfo.org
The HLRCC Family Alliance has published a comprehensive handbook which is kept up-to-date on its website go to HLRCC Handbook