2017-18 FSR Patient Ambassadors

The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to finding a cure for this disease. Since 2000, FSR has fostered over $3 million for sarcoidosis-specific research, increased awareness, and serve as an authoritative resource for patients, health professionals and the public. FSR strongly believes that the causes of this disease, and ultimately a cure, will be uncovered through rigorous and extensive scientific research fueled by patient engagement.

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. Patient Ambassadors will also help gather and analyze feedback from FSR constituents to make specific recommendations to strengthen the effectiveness of FSR programs.

In its second year, the FSR Patient Ambassador Program will consist of 30 members. Members commit to serve a full-year term from March 2017 to March 2018.

Patient Ambassadors will meet at least once a year in person for a full-day, team training. Stipends are provided for this training and while we strongly encourage participation, it is not required for those members for whom travel would be difficult or harmful.  
During the welcome and training session (or on a conference call with FSR staff following training), members of the program will set goals within 6 categories:

·         Education/Awareness
·         Advocacy
·         Fundraising
·         Physician Outreach & Engagement
·         Patient Registry/Research Engagement
·         Patient Outreach & Support

These goals will set the expectations we have for ourselves and the team. While we hope to accomplish a great deal in the one-year team, we recognize that many unexpected circumstances may arise when living with a chronic illness. Thus, the number one priority is self-care and there are no hard and fast expectations from FSR. That being said, to help applicants understand the commitment and parameters for continuation in the program after one year, we’ve established the following expectations:

·         Create and achieve self-made and FSR approved goals within at least 3 of the above categories during the one-year term
·         Attend at least 75% of quarterly webinars for FSR Patient Ambassadors hosted by FSR, designed to keep individuals informed about organization-wide news and updates, FSR Patient Ambassador progress and challenges, and areas in which staff need ambassador support
·         Complete biannual individual check-in with FSR
·         Keep detailed and accurate records for communication and programming 
·         Submit report regarding overall highlights, insights and best practices at the end of service 

Questions or concerns can be address with Kelli Beyer, Education and Outreach Manager for the Foundation for Sarcoidosis Research at kellI@stopsarcoidosis.org or 312-341-0501.

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