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March 31, 2020March 31, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

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The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 23, 2020March 24, 2020

Mobile App for SmartVest System Available for Patients’ Use

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Electromed’s SmartVest can now be managed using a smartphone or tablet application called the SmartVest Connect app, the company reported. The app connects to the SmartVest on smartphones or tablets ... Read more

March 20, 2020March 20, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

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Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see ... Read more

March 16, 2020March 16, 2020

Molgradex Stops Bacteria in Bronchiectasis Patients with Lung Infections, Trial Shows

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Treatment with inhaled therapy Molgradex (molgramostim) stopped the growth of nontuberculous mycobacteria (NTM) in the sputum of bronchiectasis patients with chronic bacterial lung infections, according to topline results from ... Read more

March 12, 2020March 12, 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 9, 2020March 9, 2020

Air Pollution Raises Risk of Bronchiectasis-related Hospitalizations in Iran, Study Finds

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Higher levels of air pollutants increase the risk of hospitalizations for lung-associated conditions, including bronchiectasis, asthma, and chronic obstructive pulmonary disease (COPD), an Iranian study has found. The study, ... Read more

March 5, 2020March 5, 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 3, 2020March 3, 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 20, 2020February 21, 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

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