AMEND (Association for Multiple Endocrine Neoplasia Disorders)

The Association for Multiple Endocrine Neoplasia Disorders (AMEND) was established in 2002 by Liz Dent and her daughter Emily Fazal, who were both diagnosed with Multiple Endocrine Neoplasia (MEN) type 1. Concerned about the lack of information and support for this rare condition, they founded AMEND to provide a resource for others affected by MEN disorders. The organization is headquartered in the UK and became a registered charity in 2003. In 2014, it transitioned to a Charitable Incorporated Organisation, regulated by the UK Charity Commission.

AMEND exists to support and inform individuals affected by multiple endocrine neoplasia disorders and associated endocrine tumors. The organization aims to improve the well-being of these individuals by providing support, disseminating information, promoting awareness among medical professionals, and assisting in research efforts related to MEN.

AMEND supports individuals and families affected by multiple endocrine neoplasia disorders, including MEN types 1, 2a, and 2b, familial medullary thyroid cancer (FMTC), phaeochromocytoma and paraganglioma (PPGL) syndromes, adrenocortical cancer (ACC), and medullary thyroid cancer (MTC).

AMEND engages in several primary activities, including:

• Advocacy for patients with MEN and related conditions
• Educational initiatives to raise awareness and understanding of MEN disorders
• Direct support programs for patients and their families
• Collaboration with medical professionals and researchers to enhance patient care and research

AMEND provides a range of support services to patients and their families, including:

• Information hotlines and consultations for patient queries
• Educational materials and workshops to inform and empower patients
• Emotional support through counseling services and mindfulness programs
• Peer support meetings and social media groups for community building
• Financial and insurance advice to assist with the economic aspects of managing MEN disorders

Since its inception, AMEND has made significant strides in supporting the MEN community. Notable achievements include the development of the MEN Passport, a tool for patients to manage their treatment and monitoring regimes, and the establishment of free counseling services for members. The organization has also successfully launched regional volunteer projects and collaborated with other patient groups to enhance support for those affected by endocrine tumors.