FSR strongly believes that the causes of sarcoidosis, and ultimately a cure, will be uncovered through rigorous and extensive scientific research fueled in part by patient engagement. The Patient Ambassador Program puts that belief into action. 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 fourth year, the 2019-2020 class of Ambassadors consists of members representing 49 states and D.C.
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
Ambassadors are trained volunteers who educate, advocate, and fundraise on behalf of FSR. While they receive ongoing training from FSR staff and can speak from personal experience, we also encourage you to search our website for information and contact FSR staff at firstname.lastname@example.org if you have questions.