The committee is being created to help establish an advisory board to further bring patients’ voices to FSR education, communications, and research efforts. The board also would represent patients in sectors to include industry, government, insurance, and healthcare.
The foundation is seeking 10-12 committee members who exhibit a strong interest in representing patients in the sarcoidosis community. In addition to patients and caregivers, healthcare professionals in the sarcoidosis realm may apply.
Applicants also may include those who have helped build, or have been a member of, a patient advisory committee or board, as well as those who have been involved in project management, patient advocacy, or social work. To reflect patient populations in the U.S., the FSR hopes to have a diverse committee membership.
The deadline for applications is July 28. Go here to apply.
“As a patient-founded organization and one that has always sought the input and ideas of our community, we’re thrilled to have patients help us create a formalized process to do this via the patient advisory committee,” the FSR states on its website. “We invite anyone interested to apply and lend their voice to FSR’s mission.”
Established in 2000, the Foundation for Sarcoidosis Research seeks to find a cure for the disease and improve care. To date, it has invested more than $5 million in research, and provides educational resources and other support.
More than 46,000 people from all 50 states and nearly 80 countries have joined the organization’s free Stop Sarcoidosis Online Support Community, hosted on an app platform that enables members to communicate with and support each other. The FSR’s Patient Ambassador Program empowers patients, facilitates grassroots outreach, advocates on local and national levels, supports FSR programs, and facilitates research fundraising.
Sarcoidosis is marked by an overactive immune system that leads to the formation of small clumps of inflammatory cells called granulomas in different tissues and organs. Over time, granulomas can become calcified or bone-like, and cause permanent damage.
It is estimated that the disease affects about five in 100,000 Caucasian individuals in the United States, and about 40 of every 100,000 Blacks.
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