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

HLRCC Skin bumps and Kidney tumor

by willykruger published about 1 month ago 3 comments

My story is short, for a long time, I am 45 now, i have the skin bumps. They actually didn't bother me much until about half a year now.

It hurt...

My HLRCC Story

by SamRenae published about 1 year ago 6 comments

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

Partners and Patient Groups

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