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State Ambassador Program

State_Ambassador_Program_ImageTo help drive the efforts of the Rare Action Network®, NORD launched the State Ambassador Program.

State Ambassadors are volunteers in a leadership position responsible for establishing and building a strong grassroots network of rare disease advocates within their state to help increase awareness of rare diseases and the challenges patients and their families face.

State Ambassadors serve as official liaisons between NORD, their state networks, state agencies and officials working towards improving the quality of life of patients and their families.

NORD Rare Action Network® team is committed to our volunteers engagement and contributions to the rare disease community. We are devoted to providing a worthwhile and impactful volunteer experience through the State Ambassador Program.

To find your states current ambassador please visit our State Action Center

We are currently accepting applications for the following States:

Alaska, California, Colorado, Delaware, Hawaii, Idaho, Indiana, Iowa, Louisiana, Missouri, Nevada, New Mexico, Oklahoma, Rhode Island, South Dakota, Vermont, West Virginia, Wyoming

What is the role?

State Ambassadors are volunteers interested in helping to lead their states and promote the importance of becoming a rare disease advocate within their community. They will participate in the following in-person and online activities:

  • Lead the Rare Action Network® Coalition in their state
  • Help recruit new advocates to join the network in their state
  • Develop state-based campaigns for increasing awareness on the issues of importance to the patients and caregivers in their state
  • Be the liaison between NORD RAN team and the members within their state network
  • Contribute to regional and national campaigns for RAN to take action on
  • Represent their state at Regional RAN Meetings
  • Plan and execute Advocacy events within their state, regional and local communities
  • Develop relationships with key decision-makers on state and national policy issues
  • Help mobilize their state in advocacy throughout the year, especially for Rare Disease Day!

NORD provides State Ambassadors with the training, tools, information, and resources needed to execute activities.

What is the commitment?

State Ambassadors will be asked to hold 2-year terms with a commitment of at least 4-6 hours/month. Ambassadors will be asked to join bi-monthly webinars/conference calls with the Rare Action Network® team to receive training, education, as well as up-to-date news and information on campaigns, issues, and progress. These calls will also serve as the platform for planning Rare Disease Day Advocacy Events. Ambassadors will work closely within their state with RAN members. Ambassadors will be expected to do some travel to events within their state and offered the opportunity to attend national events hosted by NORD.

What are the qualifications?

  • Individual Members and/or representatives of Organizational Members may apply
  • Must be 18 years or older
  • Must live in the state you’re representing
  • Prior leadership experience through volunteering and/or work
  • Possess great organizational and communication skills
  • The ability to speak comfortable in public settings
  • Have the skills needed to work collaboratively and professionally with others
  • A passion for advocating for rare diseases and desire to make change

*In order to serve as a State Ambassador, neither individuals nor their spouses/domestic partners may be employees, agents, or representatives of a pharmaceutical company, medical device manufacturer, pharmacy benefits manager company, or any other organization generally identified as “industry,” nor may they serve on the board of directors of any such company.

How to apply

This position is a high-level volunteer, leadership role and interested applicants are asked to go through an application process.

  1. Download the Rare Action Network® State Ambassador Application, fill it out and email to rareaction@rarediseases.org
  2. Following your submission, it will be reviewed by NORD Rare Action Network® team
  3. Individuals who meet the criteria will then be contacted and asked to interview over the phone with the NORD Rare Action Network® team

Please note due to the volume of applications we receive, we are unable to respond to all individuals that apply. Not all State Ambassador applicants will be asked to proceed to the interview process.

RAN State Ambassador Application

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