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…
aTyr Pharma, which is developing a candidate therapy for pulmonary sarcoidosis called ATYR1923, has appointed Andrea Wilson — a sarcoidosis patient and advocate who co-founded the Foundation for Sarcoidosis Research (FSR) — as a patient advisor. “We are pleased during Sarcoidosis Awareness Month to welcome Andrea, a…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…
From taking part in a virtual endurance challenge to joining in a virtual cooking class, to watching several speaker presentations, advocates are set to mark Sarcoidosis Awareness Month, observed each April. World Sarcoidosis Day will be celebrated on April 13. Awareness and education are crucial to increasing the recognition,…
April is Sarcoidosis Awareness Month and the Foundation for Sarcoidosis Research (FSR) is holding a virtual Memorial Monday Candlelight Vigil on April 26 to honor those who have died from the rare disease. The hour-long webinar starts at 5 p.m. CST and will feature a special tribute presentation and speakers. The…
Cells of the innate immune system called monocytes can be useful biomarkers to predict the outcomes of people with sarcoidosis, a recent study has found. The findings showed that patients with low levels of blood monocytes at diagnosis were more likely to achieve remission after two years and had…
An association has been found between active sarcoidosis, inflammation, and the presence of low levels of white blood cells, called lymphocytes, that are involved in immune defense. This finding, by researchers at the University of Illinois Chicago (UIC), could be the first step toward the development of a new biomarker…
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
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