NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
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 ... Read more
Updates
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Mobile App for SmartVest System Available for Patients’ Use
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 ... Read more -
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
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 ... Read more -
Molgradex Stops Bacteria in Bronchiectasis Patients with Lung Infections, Trial Shows
Treatment with inhaled therapy Molgradex (molgramostim) stopped the growth of nontuberculous mycobacteria (NTM) in the sputum of bronchiectasis patients with chronic bacterial ... Read more -
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
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 ... Read more
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Air Pollution Raises Risk of Bronchiectasis-related Hospitalizations in Iran, Study Finds
Higher levels of air pollutants increase the risk of hospitalizations for lung-associated conditions, including ... -
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ... -
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review ... -
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders ... -
Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day ... -
Mutations in Protein-Coding NEK10 Gene Can Compromise Mucus Clearance and Lead to Bronchiectasis, Study Finds
Mutations in a protein-coding gene called NEK10 can affect the structure and function of ...
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What a Doctor Wants People to Know About Chronic Illnesses
Social Clips
Having a chronic illness presents many challenges for patients, not only in terms of managing the symptoms they suffer but also having to deal with people’s preconceived ideas about invisible illnesses. MORE: What to expect when living with bronchiectasis. ... Read more