Foundation Seeking Members for New Patient Advisory Committee

Foundation Seeking Members for New Patient Advisory Committee
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People living with or affected by sarcoidosis are invited to apply for membership in the new patient advisory committee being established by the Foundation for Sarcoidosis Research, known as the FSR.

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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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