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May 15, 2019May 15, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

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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 ... Read more

April 22, 2019April 22, 2019

SCMR Promotes Heart MRIs During National Sarcoidosis Awareness Month

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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 ... Read more

April 15, 2019April 15, 2019

Purple Skylines Shine in Support of Sarcoidosis Awareness Month

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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 ... Read more

April 9, 2019

Nonprofit Organizations Pair Up During Sarcoidosis Awareness Month

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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 ... Read more

April 4, 2019April 4, 2019

Study Targets Activity, Oxygen Issues in Advanced Sarcoidosis Patients

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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 ... Read more

March 25, 2019March 25, 2019

Majority of Sarcoidosis Patients Experience Fatigue, Survey Shows

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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 ... Read more

March 18, 2019March 18, 2019

Unusual Case Cites Infection as Possible Trigger of Sarcoidosis

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A study reporting the case of a sarcoidosis patient infected with the bacteria Borrelia burgdorferi highlights the importance of maintaining an increased awareness about potential infectious conditions, such as Lyme disease, ... Read more

March 15, 2019March 15, 2019

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

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Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of ... Read more

March 12, 2019March 12, 2019

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

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With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed ... Read more

March 11, 2019March 11, 2019

Investigational Therapy ATYR1923 May Relieve Lung Inflammation, Preclinical Data Show

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The investigational therapy ATYR1923 for pulmonary sarcoidosis may help decrease lung inflammation by halting the infiltration of immune cells called neutrophils into the lungs, according to a preclinical study ... Read more

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