News

February 3, 2021February 3, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

News, syndicated

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

January 29, 2021January 29, 2021

Spanish Registry Seen to Capture Disease Scope, May Guide Research

News

The Spanish Bronchiectasis Registry (RIBRON) accurately reflects the characteristics of people with bronchiectasis in Spain, and may provide a solid basis for studies focused on multiple aspects of this disease, ... Read more

January 28, 2021January 28, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

News, syndicated

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to ... Read more

January 25, 2021January 26, 2021

Increased Risk of Bronchiectasis Linked to Newly Found STAT1 Mutation

News

A newly identified gain-of-function mutation in the STAT1 gene was associated with the development of bronchiectasis in a 17-year-old boy with a long history of persistent infections in the mouth and ... Read more

January 22, 2021January 22, 2021

Some Respiratory Symptoms Should Spark Suspicion of Bronchiectasis in Children

News

A case report of a young girl calls attention to the need to evaluate children with recurrent respiratory symptoms for bronchiectasis. The report, “Pediatric bronchiectasis: An orphan disease ending in ... Read more

January 20, 2021January 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for ... Read more

January 18, 2021January 19, 2021

Art Contest Salutes Creativity of Rare Disease Communities

News, syndicated

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare ... Read more

January 15, 2021January 15, 2021

Chronic Fungal Infection May Be Common in Non-CF Bronchiectasis

News

Chronic infection by the fungus Aspergillus fumigatus occurs frequently among people with non-cystic fibrosis (CF) bronchiectasis and warrants routine monitoring, a study suggests. The study, “Sensitization to A.fumigatus in subjects with ... Read more

January 12, 2021January 19, 2021

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

News

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient ... Read more

January 11, 2021January 11, 2021

Measuring Procalcitonin in Sputum May Help Manage Flare-ups

News

Levels of procalcitonin, the precursor of the hormone calcitonin, are higher in samples of coughed-up mucus from people with bronchiectasis during episodes of acute flare-ups. These findings suggest procalcitonin as ... Read more