News

Sarcoidosis in Children May Require Treatment Into Adulthood, Study Says

Pediatric-onset sarcoidosis may require long-term treatment, and can be associated with severe consequences in adulthood, according to a French study. Of 52 adults with sarcoidosis as children, half were still being treated and four had uncontrolled disease, its researchers reported. The study, “Child–Adult Transition in Sarcoidosis: A…

New Streaming Channel Showcases Rare Disease Films

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

Worse Physical Condition, Lung Function Predict Shorter Lives Without Transplant in SAPH Patients, Study Finds

People with sarcoidosis-associated pulmonary hypertension who have reduced physical fitness or worse gas exchange capacity live significantly shorter times without requiring a transplant, a new study indicates. The study, “Physiological Predictors of Survival in Patients with Sarcoidosis Associated Pulmonary Hypertension,” was published in the European Respiratory…

Foundation Seeking Members for New Patient Advisory Committee

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…