Since 2012, American Multiple Endocrine Neoplasia Support (AMENSupport) has conducted Patient-Empowering Outreach Seminars to educate individuals diagnosed with MEN and help them take charge of their health. By partnering with nationally recognized physicians and specialists at major academic medical centers, our annual seminars empower individuals with MEN and their loved ones to make well-informed medical decisions about their treatment and care. Patients can meet doctors, nurses, and ancillary specialists, and network with other individuals and families going through similar experiences. In 2016, AMEN plans to expand its seminar series to more effectively engage MEN patients as well as other stakeholders in helping us understand the health system gaps in the MEN community. Founded upon the principal of meaningful patient participation, this project will engage participants in a special workshop which will inform and teach participants about PCOR’s goals and how they can become more involved in the research process of rare conditions such as MEN.
Project collaborators include Beth Israel Mount Sinai, Mayo Clinic, and Northwestern.
The project output is to conduct 3 patient-empowering rare disease seminars.
Project Resource: July 2016 Seminar Agenda
Project Resource: October 2016 Seminar Agenda
Project Resource: February 2017 Seminar Agenda