FSR Now Accepting Applications for Patient Advocate Programs

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by Vanda Pinto, PhD |

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The Foundation for Sarcoidosis Research (FSR) is searching for volunteers to join its advocacy program, designed to support the sarcoidosis community in a number of ways, from raising awareness to coaching other advocates to providing one-on-one support to patients and caregivers.

The program consists of three advocate roles: patient advocate, advocate coach, and patient navigator. Interested candidates can apply to more than one role.

Universal eligibility criteria include being an individual patient or caregiver, or having a connection to sarcoidosis, completely filling out the 2022-23 patient advocate application, and successfully passing an interview. The FSR also is seeking volunteers not holding a leadership position in any other sarcoidosis national or international organization.

“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 [sarcoidosis] journey. I do not feel as different or alone as I did in the beginning,” Robin G., an FSR patient advocate, states on the foundation website.

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The drive for new volunteers comes during Sarcoidosis Awareness Month 2022. The awareness month is held in April each year to educate others about the rare disease, which is estimated to affect 175,000 people in the U.S.

More information about the FSR advocate program and an application can be found here. Queries can be directed to Mindy Buchanan, FSR director of patient programs, at [email protected] or 312-341-0500 ext. 110.

The registration deadline is May 1, 2022 at 11:59 pm CST.

Each position has different responsibilities and activities, as well as unique eligibility requirements.

Candidates applying to the role of patient/caregiver advocate will work on spreading awareness of sarcoidosis and sharing the experiences of patients and caregivers. Volunteers in this position are led by advocate coaches and will have a major role in recruiting other advocates and encouraging engagement with the FSR.

To be eligible for this role, candidates must complete FSR patient advocate training May 14–15 and any other foundation trainings.

The second position is advocate coach, in which volunteers mentor and support patient/caregiver advocates. They also take part in all advocate activities.

Volunteers aspiring to become coaches also must complete FSR patient advocate training as well as coach training, which will be held April 23–24. Other trainings may be provided by the FSR.

Leadership or management experience also is necessary for this role, in addition to knowledge of the FSR mission and programming. Other requirements include previous participation in FSR events and activities within the last year.

Patient navigators, the third position, will be responsible for assisting patients and/or caregivers who applied to the FSR patient navigation program. Volunteers are expected to provide one-on-one support to patients and caregivers.

Among the eligibility requirements for this position are completing FSR patient advocate training and passing FSR patient navigator training; those dates will be disclosed during summer.

Other criteria include being a patient or having experience as a direct caregiver, and having an excellent record in providing one-on-one support to patients and caregivers. Volunteers for this role must be able to commit to taking one to two patients or caregivers every 45 days.

The advocate selection committee review will assess the applications between May 2–6, with advocate interviews held May 9–17.

FSR will consider international applicants, but training will focus on U.S. support and resources.