Mission, Vision, and Goals

Mission

1. To provide support and information for anyone affected by Multiple Endocrine Neoplasia (MEN) disorders and their associated endocrine tumors.

2. To promote knowledge of and research into MEN disorders for their early and accurate diagnosis and ultimate cure.

1 Year Goals

  • Engage with community members with communication going both ways
  • Engage with the broader MEN, NET, and rare disease communities (patient, researcher, and medical as well as subcommunities)

1 Year Strategies

  • Create maintainable website
  • Routinely produce and publish content for said website
  • Create US owned email list
  • Send out emails with relevant content on a routine basis
  • Reach out to patients — by survey, by phone, by email, by whatever is needed, to get the “gestalt” of the community — its triumphs, struggles, and needs
  • Develop relationships outside of AMEND USA with regular communication/affiliation with other organizations
  • Develop and maintain relationships with members of the medical and research community through regular communication
  • Translate data, information, and knowledge gathered from the above relationships into relevant content for the community
  • Focus on infrastructure, digestible communications, and attainable goals that our volunteer-based organization can sustain

Overall — as a summary and a vision for the 2021 year — define the voice of AMEND USA as a patient organization led and run by patients, where the defining characteristics of that voice come out through enacting the strategies defined above.

5 Year Goals

  • Direct engagement with research — funding, dissemination, and putting the patient voice into research (patient-researcher collaboration)
  • Have extensive network of collaborators and colleagues across patient, medical, and research organizations and individuals
  • Paid staff
  • Consistent, significant fundraising (an obvious requirement for paid staff)
  • Continued maintenance and growth of engagement with community

5 Year Strategies

  • Funding
    • Cultivation of committed fundraisers within the MEN community and an increased base of members
    • Grant applications
    • Potential sponsorships
  • Research
    • Fund it if organizational funding permits it
    • Dissemination — draw on network to both obtain new information (from researchers and doctors and other orgs) and redistribute through patient and org network
  • Staff may possibly emerge from extending membership and subsequent calls to membership
  • Continued deployment of 1 year strategies as well as annual evaluation of goals and strategies to ensure we both accomplish goals and keep them up to date and relevant