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Program Overview

FSR believes in the power of volunteers. Through our Advocacy Program, we provide an opportunity for people to join us as leaders in a way that fits their lives and availability. Applicants will be able to choose from three advocate roles. You may apply for and, if accepted, hold more than one role. Quick descriptions of the roles can be found below, with more in-depth information on commitment, responsibilities, and training available on the application portal. FAQs can also be found below.

If you’re not ready to pursue this level of volunteering, don’t worry, there are lots of ways to get involved and volunteer! Click here to learn more.

Volunteering with FSR is important to me and something that gives to me as much as I give to it. Being a Patient Advocate has helped me feel more comfortable telling my own Sarc journey. I do not feel as different or alone as I did in the beginning.
Robin G.

FSR Patient Advocate

FSR Patient Advocate Eligibility, Roles and Responsibilities 

 

Patient Advocates are the heart of what FSR does. From supporting their peers one-on-one, sharing their stories and empowering their communities, spreading awareness far and wide, in whatever they do, they are leaders. FSR believes in our Patient Advocate community and in order to support our amazing leaders, we provide exclusive trainings arming our Advocates with the tools and skills they need to a leader in the space. 

Universal Eligibility 

  • You are an individual patient, caregiver, or have a connection to sarcoidosis 
  • You do not hold a leadership position within another sarcoidosis national or international organization (Leadership of localized and/or social media only-based groups does not affect eligibility) 
  • Complete 2022-23 Patient Advocate Application 
  • Successfully pass interview 

Responsibilities & Activities 

These vary by position. Please make sure you are clear on which role(s) you are applying for. You may apply for multiple roles within the same application. A short overview of each position available and the unique eligibility requirements are noted below. 

Advocacy Roles and Responsibilities
Patient/Caregiver Advocate

Patient Advocates are specially trained volunteer leaders who support FSR initiatives, awareness, empower their communities, and work to affect change in the sarcoidosis space. Advocates work on teams lead by Advocate Coaches to empower patients and facilitate grassroots outreach through the amplification of FSR messaging, awareness fundraising and sharing patient or caregiver experiences. As an Advocate, you will play a pivotal role in encouraging others to volunteer and engage with FSR.

Additional Eligibility Requirements: 

  • Complete FSR Patient Advocate Training 
  • Complete any additional trainings provided by FSR 
Advocate Coach

Advocate Coaches are highly active members of our volunteer communities. Our Advocate Coaches have acquired skills necessary to support a team of Patient/Caregiver Advocates in achieving their goals. They are leaders among leaders and are prepared to mentor and empower advocates throughout the year. Coaches also lead by example through participating in all of the advocate activities as well.  

Additional Eligibility Requirements: 

  • Complete FSR Advocate Coach Training 
  • Complete FSR Patient Advocate Training 
  • Complete any additional trainings provided by FSR 
  • Experience leading peers or volunteers, or other previous management experience  
  • Knowledge of FSR mission and programming 
  • Experience attending FSR events and activities within the last year 
  • Experience participating in Awareness Month 

 

Patient Navigator

Patient Navigators are matched with new patients/caregivers who have applied to the Patient Navigation program via FSR’s website in search of guidance and support. 

Some of the biggest hurdles patients with sarcoidosis and their caregivers face are lack of credible information and feelings of isolation. The purpose of the FSR Patient Navigation Program is to bridge that gap through one-on-one support with patients and caregivers who get it because they’ve been there. Patient Navigators will use their knowledge of resources and ability to assist patients and/or caregivers in their sarcoidosis journey for up to 45 days. 

Additional Eligibility Requirements: 

    • Complete FSR Patient Advocate Training 
    • Complete and pass FSR Patient Navigator Training 
    • You are a sarcoidosis patient or are/have been a direct caregiver for someone with sarcoidosis, and have the time and passion to invest in one-on-one support 
    • You’re comfortable talking about your or your loved one’s disease and the effects it has had, and you are prepared to provide support on how to manage the challenges it brings. 
    • You are already, or have a desire to become, an expert in sarcoidosis and chronic disease support and services on a national scale 
    • You are able to commit to taking 1-2 patients/caregivers every 45-days 
    • You have a record of excellence in providing one-on-one support to patients and caregivers 
Frequently Asked Questions

Do I have to be a patient to qualify as an FSR Advocate?

*No. Anyone who has been affected by this disease, directly or otherwise, who is committed to working collaboratively with FSR leadership and fellow advocates to achieve our mission is encouraged to apply.

*The Patient (caregiver) Navigator role is open to sarcoidosis patients and those who are/have been a caregiver for someone with sarcoidosis.

Is this a paid position?

This is an unpaid, volunteer service role. 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 scholarships to FSR events as needed, and send materials to volunteers so they may fulfill their FSR goals.

 When my term ends, can I reapply?

Yes. In fact, you must reapply each year. This gives everyone an equal opportunity to participate each year. 

If I encounter a personal challenge during my term, what can I do?

We understand that flare-ups can come at any time and that personal challenges will arise! As people with sarcoidosis 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, and your Advocate Coach. Beyond helping us understand why you may need to step away, 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. 

Is the FSR Advocacy Program open to international applicants?

Yes! While our training will focus on U.S. support and resources, FSR will consider applicants from across the globe.

Who do I contact with questions?

Mindy Buchanan, FSR Director of Patient Programs, oversees FSR’s Advocacy Programming. Questions regarding the program and/or application can be directed to mindy@stopsarcoidosis.org or 312-341-0500 ext. 110. 

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