The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted a two-day training of patient volunteer leaders to collaborate with and support the FSR Global Sarcoidosis Clinic Alliance Members (FSR-GSCA) to raise awareness, provide education, and advocate for better therapies and improved patient outcomes for those living with sarcoidosis. FSR-GSCA is a member program consisting of clinics, hospitals, individual providers, patients, and caregivers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis.
A total of 60 volunteers representing 31 clinics and 21 states completed the two-day training to graduate as the first class of FSR-GSCA Volunteer Leaders. The training consisted of two tracks:
- FSR-GSCA Community Outreach Leaders use their voices to raise sarcoidosis awareness through sharing their experience with this disease and drive awareness activities in their local communities and
- FSR-GSCA Community Group Leaders empower other patients and caregivers through the support and education provided at their monthly FSR-GSCA Community Groups.
“The FSR-GSCA Volunteer Leaders serve as a beacon of hope for all impacted by sarcoidosis in their local communities. These extraordinary leaders demonstrate how patient leaders, working with clinicians and clinics, can improve care and advance the research and understanding of sarcoidosis for all impacted by this rare, and sometimes fatal condition.” said Mary McGowan, FSR’s CEO.
The training consisted of comprehensive workshops on how to effectively lead community education and support groups, how to build robust educational programs in collaboration with FSR-GSCA clinics, and how to utilize fundraising events and media outreach to raise awareness in their local communities.
All FSR-GSCA Volunteer Leaders were trained by FSR and by Dr. John Capecci from Living Proof Advocacy on how to share their personal stories from lived experiences to raise awareness, change outcomes for more timely accurate diagnosis of others, and highlight the challenges of living with a rare disease.
Trained FSR-GSCA Volunteers are launching community groups and outreach programs in April, National Sarcoidosis Awareness Month. FSR will continue to provide Volunteer Leaders with advanced training and media opportunities throughout the year.
FSR is now accepting applications for the next class of FSR-GSCA Leaders to be trained in August 2023. To learn more about the FSR-GSCA, and FSR-GSCA volunteer opportunities, click here.