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April 29, 2020April 29, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

April 28, 2020April 28, 2020

Expressive Language Sampling May Aid Research in Fragile X

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A procedure for measuring language skills, called expressive language sampling (ELS), could be used to assess treatment outcomes in people with fragile X syndrome and other conditions characterized by intellectual ... Read more

April 22, 2020April 24, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

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The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 21, 2020April 21, 2020

Clinical Symptoms and/or Family History of FXS Identify 96% of FXS Cases, Canadian Study Says

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Genetic testing for fragile X syndrome (FXS) should be reserved as a second-line strategy for people without clinical features or family history suggestive of FXS, according to a Canadian ... Read more

April 14, 2020April 14, 2020

Antipsychotic Medication Trifluoperazine Shows Promise for Fragile X, Study Finds

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Trifluoperazine, an approved antipsychotic medication normally prescribed to treat schizophrenia and anxiety, may be a promising therapeutic candidate for people with fragile X syndrome, a new study suggests. The ... Read more

April 7, 2020April 7, 2020

Urine microRNA Is Potential Biomarker for Fragile X, Early Study Suggests

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A small RNA molecule detectable in urine, called miR-125a, may provide a new biomarker for fragile X syndrome that could be used to group patients based on individual differences ... Read more

April 2, 2020April 6, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News, syndicated

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

March 31, 2020March 31, 2020

Israeli Clinic for Fragile X, One of World’s Largest, Adapting with COVID-19

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Caring for kids with fragile X syndrome — the most common inherited cause of intellectual disability — is challenging even under normal circumstances. Now, as the worst pandemic in ... Read more

March 27, 2020March 27, 2020

NORD Partners with ‘Sing Me a Story’ for July 18-20 Living Rare Forum

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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 of the coronavirus disease COVID-19 pandemic. ... Read more

March 24, 2020March 24, 2020

Problems with Complex Speech, Talkativeness Seen as Common to Fragile X

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A tool to assess language, called expressive language sampling (ELS), found that people with fragile X syndrome have less complex speech, more disruptions in speech, greater talkativeness, and a ... Read more

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