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September 5, 2019September 5, 2019

Long-term Macrolide Treatment Linked to Significant Reduction in Bronchiectasis Exacerbations, Study Shows

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Long-term treatment with macrolides — a class of antibiotics — is associated with a significant reduction in the frequency of exacerbations in people with bronchiectasis, a study shows. The ... Read more

September 2, 2019August 30, 2019

‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

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Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: ... Read more

August 29, 2019August 29, 2019

New Distribution Partnerships for SmartVest System Announced

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Electromed has entered into new agreements with two home medical equipment distributors to enhance the distribution of and facilitate access to its SmartVest Airway Clearance System for people with ... Read more

August 28, 2019August 28, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such ... Read more

August 22, 2019August 22, 2019

High Incidence of Bronchiectasis Among Children with Severe Asthma, UK Study Found

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A high incidence of bronchiectasis was found among children with severe asthma in a study conducted in the U.K. The study also revealed that performing computed tomography (CT) scans in ... Read more

August 19, 2019August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 15, 2019

More Studies Needed on Antibiotic Use in Children With Bronchiectasis, Review Finds

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A lack of data on the use of different antibiotics to treat and/or prevent acute exacerbations in children with bronchiectasis highlights the need for more research in this area, ... Read more

August 8, 2019August 8, 2019

Frequent Disease Exacerbations Linked to Worse Quality of Life for Australian Bronchiectasis Patients, Study Shows

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People with bronchiectasis who experience frequent exacerbations — three or more in the previous year — have a worse quality of life, and use more healthcare resources, according to ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

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Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

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