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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…

While there no therapies approved for sarcoidosis-associated pulmonary hypertension (SAPH), pulmonary hypertension-specific therapies may help ease right heart dysfunction in a select group of patients, according to results of a large cohort study. The study, “Clinical Features and Outcomes of Patients with Sarcoidosis-associated Pulmonary Hypertension,” was published in…

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies(NCATS) at the…

During April, National Sarcoidosis Awareness Month, the Society for Cardiovascular Magnetic Resonance (SCMR) is promoting the use of cardiac imaging to non-invasively assess changes in patients’ heart tissue and overall cardiac function. Sarcoidosis is marked by an overreactive immune system and the resulting formation of small clumps of inflammatory…

Some 87 buildings, landmarks, and businesses in the U.S. and Canada turned purple April 13 in an attempt to help raise awareness about sarcoidosis during Sarcoidosis Awareness Month. The initiative is called “Illuminate the Night: Shine a Light on Sarcoidosis,” and was begun by the nonprofit Foundation…

The American Lung Association and Foundation for Sarcoidosis Research are working together during April’s Sarcoidosis Awareness Month to offer U.S. sarcoidosis patients and caregivers additional support, making available in-person support groups and online tutorials by specialists. As part of the activities of Sarcoidosis Awareness Month, the associations welcome…

Patients with advanced sarcoidosis have limited daily life physical activity, mostly because their lungs’ maximal oxygen uptake is reduced, a study shows. The findings of the study, “Daily life physical activity in patients with chronic stage IV sarcoidosis: A multicenter cohort study,” were published in the journal Health…

Fatigue is the most commonly reported symptom by sarcoidosis patients in Denmark, Germany, and the Netherlands, according to a survey conducted by researchers from those countries. Nerve damage-related symptoms are a close second. The study, “The Burden of Sarcoidosis Symptoms from a Patient Perspective” was published in the journal…