Association for Multiple Endocrine Neoplasia Disorders (AMEND)

The Association for Multiple Endocrine Neoplasia Disorders (AMEND), a non-profit UK registered charity since 2002, is a patient support group run by volunteers for the benefit of everyone affected by the multiple endocrine neoplasia disorders and their associated endocrine growths. In addition to providing worldwide email and telephone support, AMEND runs a patient registry and produces patient information with the help of an expert medical advisory team. Membership of AMEND is free and open to patients and health professionals. AMEND continually strives to look for ways of improving the care and management of MEN patients. Multiple endocrine neoplasia (MEN) type 1 is a rare genetic disorder in which benign (noncancerous) tumors arise from the cells of various glands of the endocrine system, most often the parathyroid, pancreas and pituitary glands. These affected glands secrete excessive amounts of hormones into the bloodstream, which can result in a variety of symptoms. Some benign tumors associated with MEN type 1 can become malignant (cancerous). Multiple endocrine neoplasia type 2 (MEN type 2) is a rare genetic disorder characterized by tissue overgrowth or tumor formation in various endocrine glands including the thyroid, the adrenal glands and the parathyroid. MEN type 2 is further classified into three distinct subtypes, MEN type 2A, MEN type 2B and familial medullary thyroid cancer (FMTC). All three subtypes of MEN type 2 carry an increased risk of developing a specific form of thyroid cancer called medullary carcinoma. Individuals with MEN type 2A also have an increased risk of developing benign tumors of the parathyroid (adenomas) and the adrenal glands (pheochromocytomas). MEN type 2A is associated with pheochromocytomas, multiple tumors of nerve tissue (neuromas), and multiple nerve cell tumors (ganglioneuromatosis) in the gastrointestinal tract.