FSR trains 1st patient volunteers to boost sarcoidosis awareness
Community events will be held during Sarcoidosis Awareness Month in April
The Foundation for Sarcoidosis Research (FSR) has trained its first group of volunteer patients tasked with educating and championing better treatments and outcomes for people living with sarcoidosis in the U.S.
The 60 newly trained volunteer leaders will team up with and support members of the foundation’s Global Sarcoidosis Clinic Alliance (FSR-GSCA) at 31 clinics across 21 U.S. states.
The FSR-GSCA program brings together patients, caregivers, clinics, hospitals, doctors, and other health professionals with one goal: to find a cure for sarcoidosis and to care for patients based on evidence and their needs.
Community groups and awareness activities will be launched by the volunteers during Sarcoidosis Awareness Month this April.
“The FSR-GSCA Volunteer Leaders serve as a beacon of hope for all impacted by sarcoidosis in their local communities,” Mary McGowan, the foundation’s CEO, said in a press release.
“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,” McGowan added.
Applications for next group of volunteer leaders being accepted until July 24
Dynamic, driven patients or caregivers affected by sarcoidosis who are interested in joining the next group of volunteer leaders can apply until July 24, to be trained in August.
Sarcoidosis is caused by inflammatory clumps of immune cells, known as granulomas, that form in various organs of the body, causing a wide array of symptoms and making diagnosis challenging.
Treatments for sarcoidosis typically work by suppressing inflammation and the immune system to ease symptoms. Some patients may go into remission (that is, symptoms may disappear) without treatment, whereas others may need long-term management.
Building awareness and providing education about sarcoidosis can help to improve understanding, speed the diagnosis of new patients, and make management of the disease easier.
The FSR-GSCA Volunteer Leaders serve as a beacon of hope for all impacted by sarcoidosis in their local communities.
FSR placed its bets on a volunteer training program that follows two separate tracks: community group leaders and community outreach leaders.
Community group leaders provide support and education to patients and their caregivers in monthly FSR-GSCA community groups. Community outreach leaders use their voice to share their experience with sarcoidosis at local awareness events.
To complete training, patient volunteers attend a two-day series of workshops on leading community education and support groups, developing educational programs, and using fundraisers and media outreach to raise awareness locally.
They are trained by FSR and John Capecci from Living Proof Advocacy on how to use their own experiences and personal stories to shed light on the challenges of living with sarcoidosis.
Volunteer leaders will continue to receive advanced training and media opportunities throughout the year, according to the foundation.