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State Ambassador Program

NORD’s Rare Action Network (RAN) holds the promise that together, we can influence decisions that affect the provision of quality, timely and equitable access to healthcare, services, treatments, and cures for rare diseases. To help drive the efforts of the RareAction Network®, NORD has a Rare Community Ambassador Program.

Volunteer Rare Community Ambassadors play a critical role in achieving that promise and helping to foster a community that is empowered to take action that further advances progress in research, policy, and care. They help lead outreach, engagement and empowerment activities that raise awareness, build community, and mobilize that community to advocate for change. They also help to connect families living in their state with valuable information, resources, and services that can support them as they navigate living with and caring for someone with a rare disease.

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

To find your states current rare community ambassador please visit our State Profile Page

  • Increase outreach and engagement with members of the rare disease community in your state – patients, families, caregivers, patient organizations – to build a strong and engaged network of advocates and a system of support
    • Recruit other volunteers and work together to develop outreach campaigns and activities that aim to reach ALL people living with rare diseases in your state including those that are a part of a rural, minority, indigenous, or other marginalized and underrepresented communities.
    • Work directly with NORD staff to implement education and awareness events and opportunities in your community
    • Communicate about the experiences and struggles rare disease patients and families are facing in your state with NORD’s advocacy and policy teams
  • Build and maintain strong interpersonal relationships with local and state organizations that serve or offer services to the rare disease community (e.g.: academic medical centers, hospitals, state departments and agencies, community-based organizations).
    • Recruit representatives from these organizations to attend and participate in state-based information sessions and community events
  • Collaborate with community members and organizations to develop a database of state resources that can help alleviate burdens or challenges experienced by patients and families.
    • Help to keep the database up to date, and promote and connect families to these resources
    • Host an annual State-Based Information Session (virtual or live) to help inform and educate members of the rare disease community in your state about available resources
  • Educate the public about NORD, RAN, and rare diseases by participating in and speaking at local community activities and events.
  • Support NORD/RAN advocacy and outreach campaigns
    • Share your story and invite others in your state to share theirs
    • Share and participate in email, phone, and text calls to action
    • Recruit patients and caregivers in your state to participate in advocacy surveys and questionnaires that strengthen NORD’s evidence-based advocacy efforts at the state and national levels
  • Other responsibilities
    • Help to promote NORD initiatives, events, and activities to members of the rare disease community in your state
    • Participate in Ambassador Leadership Training events hosted by NORD throughout the year
    • Regular communication with NORD staff and reporting out on volunteer work
  • Educating the public about NORD, RAN, and rare diseases by participating in local community activities, public speaking opportunities and hosting events

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

Ambassadors are expected to commit to a two-year term and agree to participate in NORD training events. The expected time commitment per month is 6-8 hours.

  • Proactive and passionate about the mission of NORD
  • Strong interpersonal communication skills
  • Represents core values of empathy, collaboration, integrity, honesty, respect, diversity and inclusion, and learning
  • Comfortable speaking to groups and individuals about rare diseases, NORD, and RAN
  • Strong desire to engage with the public and raise awareness about rare diseases
  • Demonstrated reliability and professionalism
  • Recognizes and complies with program rules and requirements as communicated by NORD staff
  • Has previous volunteer experience or other applicable professional experience
  • Computer skills (Email, Microsoft Office, Google docs/drives)
  • Must be 18 years or older and live full-time in the state you are representing
  • Reliable transportation to attend meetings and events

*In order to serve as a Rare Community 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.

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

  1. CLICK HERE to complete the online RareAction Network® State Ambassador Application
  2. Following your submission, it will be reviewed by NORD RareAction Network® team
  3. If the applicant does not have a history of volunteer work or engagement with the National Organization for Rare Disorders (NORD), we may request that you volunteer on an existing project or initiative first before being considered for the ambassador role. This will help you and NORD to determine the most satisfying and appropriate volunteer opportunities for you.
  4. Individuals who meet the criteria will then be contacted and asked to interview over the phone with the NORD RareAction 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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