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March 16, 2020March 16, 2020

FDA Approves Ofev for Sarcoidosis and Other Interstitial Lung Diseases

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Boehringer Ingelheim‘s Ofev (nintedanib) has been approved in the U.S. as the first treatment for chronic fibrosing interstitial lung diseases (ILDs) with a progressive phenotype. This approval by the ... Read more

March 9, 2020March 9, 2020

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

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The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still ... Read more

March 4, 2020March 4, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

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In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the ... Read more

March 2, 2020March 2, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

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Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, ... Read more

February 26, 2020February 26, 2020

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

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Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. ... Read more

February 24, 2020February 24, 2020

Imbalance in Certain Immune Cells May Promote Pulmonary Sarcoidosis, Study Suggests

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Researchers have discovered that patients with pulmonary sarcoidosis have an imbalance in two subsets of immune cells, namely B-cells and follicular T-helper cells — findings that support the potential ... Read more

February 20, 2020March 3, 2020

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

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An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and ... Read more

February 17, 2020February 17, 2020

Arthritis Medicine Tofacitinib May Be Effective in Treating Multiorgan Sarcoidosis, Study Reports

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The arthritis medicine Xeljanz (tofacitinib) may be an effective therapeutic alternative to conventional medications for the treatment of multiorgan sarcoidosis. This finding was described in the study, “Treatment of Multiorgan ... Read more

February 10, 2020February 10, 2020

FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

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The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous ... Read more

February 7, 2020February 7, 2020

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

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The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over ... Read more

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