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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

May 29, 2020May 29, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

News, syndicated

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene ... Read more

May 25, 2020May 25, 2020

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

News, syndicated

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session ... Read more

May 20, 2020May 20, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

News, syndicated

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. ... Read more

May 19, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

News, syndicated

May 18, 2020May 18, 2020

Sarcoidosis Does Not Increase Risk of Worse COVID-19 Outcomes, Early Survey Data Show

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Sarcoidosis, and the medications prescribed to patients with the disease, do not lead to worse outcomes from COVID-19 infection, according to preliminary results of a survey conducted by the ... Read more

May 11, 2020May 11, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

News, syndicated

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 4, 2020May 4, 2020

Chitotriosidase Enzyme May Be Indicator of Sarcoidosis Activity, Severity

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An enzyme called chitotriosidase appears to be a reliable biomarker of sarcoidosis, a study suggests. The activity of this enzyme is correlated with sarcoidosis disease activity, severity, dissemination throughout ... Read more

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