Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Reed’s Syndrome is one of several rare familial syndromes involving kidney cancer.
The key symptoms of which only some MAY occur are (i) Cutaneous Piloleiomyomas (Skin Lumps) (ii) Uterine Leiomyomas (Fibroids) (iii) Papillary Type 2 or Collecting Duct Renal Cell Carcinoma (RCC is Kidney Cancer) and recently (iv) Pheochromocytoma and Paraganglioma. Please refer to our “QUICK FACTS” ) for a quick overview and then study our Handbook for more detailed information.
We have formed the worldwide HLRCC Family Alliance (HLRCCFA), a family support organization similar to the VHL Alliance. We are indebted to the VHLA at www.vhl.org for its guidance and in supporting us with their infrastructure. If you are interested in connecting with other families affected by HLRCC, please go to our Support Message Boards - Smart Patients or Facebook. We all have a common interest in helping and supporting each other.
We also help and support HLRCC families with a child with Fumarase Deficiency (or fumaric aciduria).
Bruce Hatch Lee and son Andrew Lee have created Driven to Cure, a 501(c)(3) nonprofit organisation which has raised in its first year over $300,000 for research. Its mission statement is "To bring awareness and provide funding for the research of rare kidney cancers in children and young adults."