Welcome - Multiple Endocrine Neoplasia (MEN) Community

What is Multiple Endocrine Neoplasia (MEN) ?

Multiple Endocrine Neoplasia (MEN) disorders are rare inherited syndromes which usually cause more than one gland in the body to form growths (neuroendocrine tumors or NETs). Most of the growths occurring in MEN patients are benign (not cancer), but some do develop into cancer. In MEN1, cancer may develop in certain cells in the pancreas. In MEN2, cancer almost always develops in the thyroid gland. Where possible, surgery to remove the thyroid in children diagnosed with MEN2a is performed before age of 5, or within the first year of life in MEN2b. Affected glands over-produce hormones (the body’s chemical messengers), causing a variety of different symptoms. There are currently three main types of MEN, MEN1, MEN2a and MEN2b (MEN3) with other even rarer variants identified. Each child of an affected parent has a 1 in 2 or 50% risk of inheriting the condition.

Multiple Endocrine Neoplasia (MEN) Resources

More members stories

Latest Member Stories

MY Story with MEN1

by AMEN published about 1 month ago
One comment

For our entire 13 year marriage I watched my darling husband battle MEN1. He found out he had a brain tumor when he was 20. He lost his mother in h...

Susan

by RareConnect team published about 1 month ago
One comment

Life went on very normally for the next 20 years. I had occasional blood test monitoring for MEN 1 with different endocrinologists in the Atlanta a...

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.