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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

My HLRCC Story

by SamRenae published 14 days ago One comment

Armed with this diagnosis and soon after finding out about some pretty large clustered uterine fibroids I scoured the internet and found my diagnos...

FH gene carrier detected in 2008

by tibey29 published about 1 month ago 2 comments

Hello everyone,
FH (fumarate hydratase) gene mutation was identified in 2008.
At that time in 2007, I had already suffered two recurrences of pol...

Partners and Patient Groups

RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.