Welcome - Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Community

What is Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) ?

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) or Reed’s Syndrome is one of several rare familial syndromes involving kidney cancer and is caused by mutations in the Fumarate Hydratase (FH) Gene. 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). Fumarase Deficiency or fumaric aciduria is an associated ultra-rare condition caused normally by both parents having mutations in the Fumarate Hydratase (FH) Gene.

Source: Participating patient organizations visible below

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Resources

More members stories

Latest Member Stories

Graham’s Story

by grahamjlovitt published about 1 month ago
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I had the usual diagnostic tests over the next couple of months with no particular alarm until I had an ultrasound and saw the look of concern on t...

Coming to Terms

by dmumper published 5 months ago
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I was diagnosed with cutaneous leiomyomas in 2007. I questioned the connection to uterine leiomyomas because I had a hysterectomy at age 27 due to ...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.