Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…
A large-scale analysis of proteins in bronchoalveolar lavage cells and fluid isolated from the lungs of people with sarcoidosis identified several different biological pathways not found in healthy individuals, a study reports. The findings may help discover unknown disease mechanisms underlying the…
A grant from the Foundation for Sarcoidosis Research (FSR) will fund the development of a new mouse model of sarcoidosis, which could aid in understanding how the disease develops and ultimately serve as a platform for testing potential treatments. The FSR’s Small Grant program provides up to $25,000…
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…
Although neurological symptoms are rare in people with sarcoidosis, physicians should consider neurosarcoidosis in cases of myelitis and hydrocephalus, as prompt steroid treatment can improve patient outcomes. The recommendation comes from researchers at the Jersey Shore University Medical Center in a recent case study, “Hydrocephalus…
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…
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…
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…
New diagnostic guidelines for cardiac sarcoidosis yield a higher number of diagnoses and identify more cases of isolated cardiac sarcoidosis (iCS), according to a study in Japan. In cardiac sarcoidosis, inflammatory clusters of white blood cells — called granulomas — affect the heart but can also affect other…
Protalix BioTherapeutics and SarcoMed USA have entered into a non-binding agreement related to the development and commercialization of PRX-110 (alidornase alfa) for pulmonary sarcoidosis and related diseases, according to a Protalix press release. PRX-110 is currently being developed by Protalix as a potential therapy for…
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