News

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with coexisting sarcoidosis and inflammatory bowel disease (IBD) have higher in-hospital rates of respiratory failure, but lower colon surgery rates and gut penetrating disease, than those with IBD alone, a large-scale patient record analysis found. …

Kidney involvement, heart wall abnormalities, and left heart failure were identified as risk factors for a relapse of cardiac sarcoidosis, a long-term study involving more than 150 patients suggests. Immunosuppressant treatment with cyclophosphamide was also linked to a significantly lower risk of cardiac relapse in this patient population.

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Exposure to inhaled silica dust appears to increase the risk of sarcoidosis among men 20 to 65 years old, according to a recent study from Sweden. Men 35 and younger, and older men with more than six years of regular exposure to the dust saw the highest risk.

People with sarcoidosis are being asked to donate blood samples and information related to their disease to help the Oklahoma Medical Research Foundation (OMRF) further its work into how sarcoidosis develops and progresses. Healthy individuals, serving as a control group, are also asked to take part. Participants will be asked…

People with sarcoidosis who have impaired lung function seem to be at greater risk for severe COVID-19 disease, a new study suggests. The study, “Moderate or Severe Impairment in Pulmonary Function is Associated with Mortality in Sarcoidosis Patients Infected with SARS‑CoV‑2,” was published in the journal …

Sarcoidosis is associated with a higher risk for certain complications in pregnancy, according to data from a Swedish population-based study. These complications include eclampsia — the onset of seizures in pregnant women — and preeclampsia or high blood pressure in the mother, cesarian delivery, preterm…

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…