PLEASE NOTE: This application and information is intended only for CURRENT Patient Ambassadors only. The information and application for NEW applicants is available here.

The deadline by which you need to submit your application is December 12, 2018. Not doing so may jeopardize your ability to participate in the program in the upcoming term. Please contact Brittiany with any questions or concerns via email or at 312-341-0500.

Program Overview

 

FSR Patient Ambassadors are selected across the country to work closely with FSR staff to empower patients, facilitate grassroots outreach, advocate on the local and national level, support FSR programs, and facilitate fundraising for sarcoidosis research. In its fourth year, the FSR Patient Ambassador Program will consist of members representing every state in the continental US. Members commit to serve a full-year term from March 2019 to March 2020.

Our goal is for FSR Patient Ambassadors to meet at least once a year in person for a two-day, team training, currently scheduled for February 23-24, 2019. Stipends are provided for this training and while we encourage participation, it is not required, particularly for those members for whom travel would be difficult or harmful. Accommodations will be made available to get you training materials and resources where you live.

During the welcome and training session (or during a self-led training course following training), members of the program will learn about FSR programming and develop an engagement plan through which they can support FSR and/or the greater mission of the Foundation (e.g. promoting research and drug development, advocating on the local or national level to support legislation that helps rare disease patients).

Expectations

While we hope to accomplish a great deal in the one-year team, we recognize that many unexpected circumstances can arise when living with a chronic illness, caring for a loved one living with sarcoidosis, or when life presents other personal challenges. Thus, the number one priority is self-care and there are no hard and fast expectations from FSR. We recognize that our team members are volunteers, most of whom are living with sarcoidosis and/or juggle full-time jobs and other responsibilities. That being said, we strive to ensure that 100% of Ambassadors are engaged during their term.

Engaged Ambassadors are those who within the last 3 months have:

  • communicated their activities related to their role to an FSR staff member
  • communicated their focus on self-care to an FSR staff member
  • attended in-person and/or online FSR events (e.g. webinars) related to their Ambassador role
  • completed a survey related to the Ambassador program
  • completed a phone “check-in” with FSR’s Patient Engagement Manager

A “check-in” constitutes a phone conversation with the Patient Engagement Manager through which the Ambassador communicates their well-being, any activities, feedback on the program, and needs. Ambassadors are required to complete two check-ins per year.

Ambassadors who choose to focus on self-care and communicate that decision to the FSR Patient Engagement Manager are considered to be engaged and will be encouraged to stay in the program if they are still interested in contributing their time and skills for another term.

There is no term limit for FSR Patient Ambassadors. Engaged individuals, especially those who are veterans in the program, will be encouraged to continue their term and share their knowledge and experience with the rest of the team.

Individuals who were disengaged twice within the same term will be asked to consider stepping down from their role to allow another volunteer to join the program who can better fulfill the communication requirements.

Timeline

Applications for the FSR Patient Ambassador Program 2019-20 Term will be accepted on a rolling basis according to the following timeline:

  • November 9, 2018 – application cycle for 2019-20 term open
  • December 12, 2018 – applications close
  • November 9, 2018 – January 2, 2019 – rolling interviews for new ambassadors, final evaluations for current ambassadors
  • January 10, 2019 – welcome letters sent to all 2019-20 Patient Ambassadors
  • February 4, 2019 – public announcement of 2019-20 Patient Ambassadors
Training Information

The training for all accepted FSR Patient Ambassadors will be held in Washington, DC on Saturday February 23 to Sunday, February 24, 2019 with an optional Hill Day taking place on Monday, February 25, 2019. 

  • Guest rooms will be provided at the venue, if required, at no cost to Ambassadors for the nights of Friday, February 22 and Saturday, February 23. Approval to attend and rooms for Sunday, February 24 will be offered on a first-come, first-served basis. 
  • FSR will provide meals throughout the training
  • Free parking is available on-site.
  • Shuttle bus from the conference center to Capitol Hill for Hill Day

We expect to award airfare/transportation stipends to all ambassadors. Stipends awarded may not cover your entire airfare/transportation expenses, but we will make every effort to make sure team members can attend. 

The training agenda will be announced in January.

Application for Current Ambassadors