News

October 20, 2020October 20, 2020

Zygel May Improve Behavior in Children With Severe Fragile X, Trial Data Suggest

News

Zygel, an experimental cannabidiol (CBD) gel, may lessen the extent of behavioral abnormalities in children with fragile X syndrome who have more severe disease, new clinical trial data suggest. ... Read more

October 16, 2020October 16, 2020

UC Davis Establishing 4-Year Program for Students With Fragile X, Other Disabilities

News

The U.S. Department of Education awarded $2.1 million to the University of California, Davis, MIND Institute to create a four-year college program for students with intellectual disabilities, including those ... Read more

October 13, 2020October 13, 2020

Patrick Wild Centre Opens Website for Its Fragile X Registry

News

The Patrick Wild Centre at The University of Edinburgh launched an online portal for its fragile X syndrome registry on Oct. 10, European fragile X awareness day. The new website, called ... Read more

October 9, 2020October 9, 2020

Connecta Therapeutics Raises Funds to Advance Potential Fragile X Therapy

News

Connecta Therapeutics raised €1.7 million (about $2 million) in investments that will enable it to bring a potential fragile X syndrome (FXS) therapy to Phase 1 clinical trials in ... Read more

October 7, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

October 6, 2020October 6, 2020

$25M NIH Grant to Support Fragile X Research at 3 Centers

News

The National Institutes of Health (NIH) is awarding multi-year grants to three centers conducting collaborative research into fragile X syndrome: Baylor College of Medicine, Emory University, and Cincinnati Children’s ... Read more

September 29, 2020September 29, 2020

Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US

News, syndicated

It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they ... Read more

September 25, 2020September 25, 2020

Fragile X Girls Less Aware of Bullying, Study Suggests

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School-aged girls with fragile X syndrome are less aware of bullying than children of the same age and intellectual abilities, a study suggests. These findings indicate that difficulties in ... Read more

September 22, 2020September 22, 2020

Strong Placebo Effect Warrants Better Trial Design in Fragile X, Study Finds

News

Clinical improvements among participants receiving a placebo — known as the placebo effect — are common in clinical trials of fragile X syndrome, a study conducted by scientists across ... Read more

September 18, 2020September 18, 2020

Hospitalization After Emergency Department Visit Common in Fragile X Patients, Study Finds

News

Almost half of emergency department visits for fragile X syndrome result in hospitalizations, according to a nationwide study in the U.S. The finding underscores the importance of surveillance systems ... Read more