HLRCC (Hereditary Leiomyomatosis & Renal Cell Cancer & FD or Fumarase Deficiency)
Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) patients often have benign skin lumps (cutaneous leiomyomas) and if female earlier and larger fibroids (uterine leiomyomas) leading to early hysterectomies. Also there is a higher risk of developing an aggressive kidney cancer which can spread when small. Annual MRI screening is recommended.
HLRCC Family Alliance – Information for HLRCC and FD patients can be found on this website and in the published HLRCC Handbook.
VHL UK/Ireland Facebook Group – A private Facebook group to discuss, find out information and meet others affected in your area.
INSPIRE Forum – The VHL Family Alliance Group in INSPIRE supports HLRCC, as discussion topics within the VHL Community. It provides private patient to patient message board support. It allows patients to talk with each other about their questions and concerns, while providing emotional support to one another. You can also write your own journal entries or start or add to discussion threads. There is privacy control. We strongly advise you to join and make friends.
Rare Connect (HLRCC)– RareConnect is an alternative to INSPIRE, but has the advantage of providing language translation facilities. You can look in on RareConnect and then decide if you would like to join by creating your own user name and password
Other useful information
Healthy living – the importance of diet and lifestyle to VHL and similar genetic conditions
Cancer in Our Genes International Patient Databank – take part in the VHL Alliance’s clinical research study
VHL Alliance Research – the latest VHL Alliance research