Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000 in grants, totaling…
African American women diagnosed with sarcoidosis or who have strong connections to the sarcoidosis community, are invited to apply to become members of the Women of Color Committee of the Foundation for Sarcoidosis Research (FSR). The FRS Committee aims to provide insight into a large-scale education and awareness…
A rare case of sarcoidosis affecting only the spleen was successfully diagnosed using tissue analysis, after imaging scans and lab tests failed, a case study reported. Sarcoidosis should be considered when multiple tumors in the spleen have been detected, the scientists recommended. The…
People with severe and difficult-to-treat sarcoidosis can safely switch from Remicade (infliximab) or its biosimilar Inflectra, to another biosimilar called Flixabi and maintain similar clinical benefits, a study reports. Six months after switching, none of these patients had stopped…
Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often are a lifelong after a transplant, require these people to add an extra layer of protection against viruses as common as a cold or as dangerous as COVID. They…
The Foundation for Sarcoidosis Research (FSR) is holding a two-day virtual patient education summit focused on providing relevant medical content on sarcoidosis, patient and care-partner perspectives, and updates on current and future research in the field. To attend the summit, set for June 12–13, patients and caregivers can…
A professor at Northwestern University has been awarded a $50,000 American Thoracic Society (ATS)/Mallinckrodt Pharmaceuticals Research Grant to study the role of immune macrophages in the development of sarcoidosis. Sarcoidosis is a complex immune disease characterized by the accumulation of immune cells such as macrophages,…
A short, in-hospital exercise program was found to decrease the levels of fats, or lipids, in the blood of people with sarcoidosis and to improve their physical health. In fact, researchers said that changes in the lipid profile could potentially be used to determine how well a patient is…
More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
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