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 $4 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 third 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 2017 to March 2018.

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 25-26, 2018. 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 a work 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). Initiatives led by ambassadors in the past include:

  • Securing state proclamations which designate April as Sarcoidosis Awareness Month
  • Assisting FSR staff in organizing FSR Patient Conferences
  • Planning and executing local walks/fundraising events
  • Organizing a congressional briefing in Washington, DC
  • Assisting FSR-affiliated researchers in developing clinical trials
  • Educating sarcoidosis patients and loved ones about this disease and FSR, connecting them to resources to help them navigate living with this disease
  • Speaking at large-scale FSR and partner conferences
  • Starting and/or leading local support groups
  • Physician Outreach & Engagement
  • Assist FSR in developing new materials and resources for patients/physicians

In addition to building upon the accomplishments of veteran and former Ambassadors, having at least one Ambassador in every state will drastically enhance FSR’s ability to connect newly diagnosed patients, local physicians, and other stakeholders with a knowledgeable FSR-affiliate in any given state. Supported by FSR staff, Ambassadors also serve as state-level experts on the services available to sarcoidosis patients, top-performing clinicians, unmet needs, and more.

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. 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 follow self-made and FSR approved work plan 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 all scheduled, individual check-ins with FSR
  • Communicate regularly with FSR staff via email/phone to report challenges and successes
  • 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, Director of Education and Outreach for the Foundation for Sarcoidosis Research at or 312-341-0501.


Training Information

This training for all accepted FSR Patient Ambassadors in 2018 will be held in Washington, DC on Sunday, February 25-Monday, February 26, 2018.

  • Guest rooms will be provided at the venue, if required, at no cost to Ambassadors for the nights of Saturday, February 24 and Sunday, February 25.
  • FSR will provide breakfast, lunch, and dinner on Sunday, February 25 and breakfast and lunch on Monday, February 26.
  • Free parking is available on-site.
  • Shuttle bus from the conference center to Capitol Hill (guaranteed for ambassadors only at this time – may also be extended to family members or friends who may accompany ambassadors to training, if space allows)

We hope 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 tentative training agenda is as follows:
Sunday, February 25

7:30 am – 8 am


8 am – 9 am

Welcome, Introductions

Kelli Beyer, Director of Education and Outreach, FSR

9 am – 9:50 am

FSR Research Updates

Ginger Spitzer, Executive Director, FSR

9:50 am – 10 am


10 am – 11 am

Sarcoidosis 102

Guest Physician Speaker

11 am – 12 pm


Ginger Spitzer, Executive Director, FSR

12 pm – 1 pm


1 pm – 2 pm

Communications Training

Guest Speaker

2 pm – 2:50 pm

Developing Our Workplans

Kelli Beyer, Director of Education and Outreach, FSR

2:50 pm – 3 pm


2 pm – 3 pm

Advocacy Panel

Guest Speakers

3 pm – 3:30 pm

Social Media Training

Maggie Hudson, Communications Manager, FSR

3:30 pm – 4 pm

Self Care Workshop

Guest Speaker

4 pm – 5 pm

Patient as Fuel for Research

Kelli Beyer, Director of Education and Outreach, FSR

5 pm – 6 pm


6 pm – 8 pm

Team Dinner

Monday, February 26

7:30 am – 8 am


8 – 9 am

FSR Resources & General Housekeeping

Kelli Beyer, Director of Education and Outreach, FSR

9 – 10:30 am

Collaborations & Mentorships

Kelli Beyer, Director of Education and Outreach, FSR

10:30 am – 11:30 am

Buses to Capitol Hill

11:30 am – 2 pm

Congressional Briefing


Apply Today

Only complete applications will be considered. Please allow up to 10 business days for a response.

2018 FSR Ambassador Application

  • General Information

  • Narrative Section

  • What do you hope to gain from the experience?
  • Please include hard skills as well (e.g. graphic design, public speaking, writing skills, etc.)
    Please select all that apply.
  • Drop files here or
Frequently Asked Questions

FSR Patient Ambassador Program FAQs

  1. Do I have to be a patient to qualify as an FSR Patient Ambassador?

No. Anyone who has been affected by this disease whether directly or otherwise who is committed to working collaboratively with FSR leadership and fellow ambassadors to achieve our mission is encouraged to apply. Historically, our team has included sons/daughters of those living with sarcoidosis, survivors or sarcoidosis warriors, and healthcare providers who recognize the burden of this disease and unmet needs of patients and their family members.

  1. Is this a paid position?

Not at this time. This is an unpaid, volunteer service. While we would love to be able to provide stipends in the future, our budget does not currently allow for reimbursement for your time. That being said, we do routinely offer grants to offset expenses incurred by volunteers who are planning events benefitting FSR, provide travel stipends to attend the annual training, and send materials to volunteers so that they can fulfill their FSR-approved work plan.

  1. When my term ends, can I reapply?

Ambassadors who enjoy the role and who continue to be a mutual fit are often grandfathered into the program for another term. Each ambassador who wishes to return must complete the returning applicant form on FSR’s website ( to express their interest and provide insights they’ve developed during their term. A phone interview to discuss challenges and goals for the coming year may take place before another term of service is granted.

  1. If I encounter a personal challenge during my term, how should I respond?

We understand that flare ups can come at anytime and that personal challenges will arise! As sarcoidosis patients know too well, living with a chronic condition can be unpredictable and challenging. Self-care will always come first for the program! If you are experiencing a hardship, please simply be in communication with an FSR staff member. Beyond helping us understand why you may have fallen short of your work plan, we want to be there for you and your family if you are going through a difficult time. Provided you communicate with us to the best of your ability and help when you feel you are well enough to do so, such events will not prevent your participation in the program now or in the future.