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July 16, 2020July 16, 2020

Women With Sarcoidosis Have Higher Mortality Risk From Heart Problems, Study Suggests

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Women with sarcoidosis are more likely to die in hospital from heart complications and also to experience sudden cardiac death than male patients, while men are more likely to ... Read more

July 13, 2020July 13, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

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The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 9, 2020July 9, 2020

Worse Physical Condition, Lung Function Predict Shorter Lives Without Transplant in SAPH Patients, Study Finds

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People with sarcoidosis-associated pulmonary hypertension who have reduced physical fitness or worse gas exchange capacity live significantly shorter times without requiring a transplant, a new study indicates. The study, ... Read more

July 2, 2020July 2, 2020

Foundation Seeking Members for New Patient Advisory Committee

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People living with or affected by sarcoidosis are invited to apply for membership in the new patient advisory committee being established by the Foundation for Sarcoidosis Research, known as ... Read more

June 25, 2020June 25, 2020

Severe Fatigue Very Common in Pulmonary Sarcoidosis Patients, Dutch Study Shows

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Severe fatigue affects more than 60% of pulmonary sarcoidosis patients and is associated with worse shortness of breath, daytime sleepiness, anxiety and depression, catastrophizing, functional impairments, and quality of ... Read more

June 22, 2020June 22, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

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The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 18, 2020June 18, 2020

Adhering to Treatment Plan Linked to Higher Quality of Life in Sarcoidosis Patients

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Sarcoidosis patients who more closely follow their established treatment plans were found to have a significantly improved health-related quality of life, a new observational study shows. The study, “Association ... Read more

June 11, 2020June 11, 2020

MRI ‘Patterns’ May Aid in Diagnosing Sarcoidosis Affecting the Spine

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Sarcoidosis affecting the spinal cord tends to result in distinct patterns visible on MRIs of the spine, which may help in properly diagnosing this disease type, a new study ... Read more

June 10, 2020June 10, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

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The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis ... Read more

June 4, 2020June 4, 2020

ATYR1923 Binds to NRP2 Protein Found at Key Immune Cells, Data Show

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ATYR1923, a candidate therapy for pulmonary sarcoidosis, binds specifically to the neuropilin-2 (NRP2) receptor protein, which is located at the surface of immune cells responsible for inflammation and granuloma ... Read more

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