Endocrine Abstracts

AMEND provides information resources and support services to families with MEN syndromes, offering free membership, educational and peer support events, and a free Counselling Service provided by rare disease specialist psychotherapy organisation, Rareminds. Our 2021 Counselling Service feedback data (n=24) showed that the biggest issue by far for patients is dealing with their diagnosis (39% of respondents). Managing symptoms and treatment are also significant issues. The service showed that 78% of counselling service users presented to the service with moderate to severe distress, however, on completion of their sessions, 78.5% were scoring in the low-distress or healthy range. The preliminary results from our 2022 Member Survey (n=38) show that while around 90% of members feel confident discussing their condition with their specialist doctor, almost 60% felt that their GP did not understand their condition. Almost 45% of respondents felt that their biggest challenge related to their condition had been getting diagnosed, and 40% felt that their condition had a negative impact on their emotional health. Regarding helpful AMEND resources, around 90% of survey respondents rate our website and free membership pack as good/excellent. AMEND uses a variety of ways to provide information and support to MEN patients, including videos, books, comics, cartoons, virtual peer support meetings, an annual patient information day, and much more.