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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

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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 8, 2020October 8, 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

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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

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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

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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

September 15, 2020September 15, 2020

Zynerba, FDA to Discuss Next Steps for Zygel in Fragile X Treatment

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The U.S. Food and Drug Administration (FDA) and Zynerba Pharmaceuticals will meet later this year to discuss the results of the CONNECT-FX trial and next steps regarding a potential ... Read more

September 11, 2020September 11, 2020

Closing Leaky Mitochondria Halts Behavioral Problems in Fragile X, Study Suggests

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Shortage of energy due to leaky mitochondria — the powerhouses of cells — contributes to behavioral abnormalities in fragile X syndrome, a study has found. Closure of the leaky ... Read more

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