May 5, 2020May 5, 2020
Lower Quality of Life Linked to Behavioral Problems in Fragile X Children, Parents Report
News
Poorer health-related quality of life (HRQoL) correlate with greater emotional, behavioral, and school problems in children with fragile X ... Read more
April 30, 2020April 30, 2020
NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts
syndicated
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases ... Read more
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 ... Read more
April 29, 2020April 29, 2020
Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak
Announcements
FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients ... Read more
April 28, 2020April 28, 2020
Expressive Language Sampling May Aid Research in Fragile X
News
A procedure for measuring language skills, called expressive language sampling (ELS), could be used to assess treatment outcomes in ... Read more
April 22, 2020April 24, 2020
NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
News, syndicated
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community ... Read more
April 21, 2020April 21, 2020
Clinical Symptoms and/or Family History of FXS Identify 96% of FXS Cases, Canadian Study Says
News
Genetic testing for fragile X syndrome (FXS) should be reserved as a second-line strategy for people without clinical features ... Read more
April 14, 2020April 14, 2020
Antipsychotic Medication Trifluoperazine Shows Promise for Fragile X, Study Finds
News
Trifluoperazine, an approved antipsychotic medication normally prescribed to treat schizophrenia and anxiety, may be a promising therapeutic candidate for ... Read more
April 7, 2020April 7, 2020
Urine microRNA Is Potential Biomarker for Fragile X, Early Study Suggests
News
A small RNA molecule detectable in urine, called miR-125a, may provide a new biomarker for fragile X syndrome that ... 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 ... Read more
March 31, 2020March 31, 2020
Israeli Clinic for Fragile X, One of World’s Largest, Adapting with COVID-19
News
Caring for kids with fragile X syndrome — the most common inherited cause of intellectual disability — is challenging ... Read more
March 27, 2020March 27, 2020
NORD Partners with ‘Sing Me a Story’ for July 18-20 Living Rare Forum
News
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been ... Read more

May 5, 2020May 5, 2020

Lower Quality of Life Linked to Behavioral Problems in Fragile X Children, Parents Report

News

Poorer health-related quality of life (HRQoL) correlate with greater emotional, behavioral, and school problems in children with fragile X syndrome, according to a study involving parent questionnaires. The study, ... Read more

April 30, 2020April 30, 2020

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

syndicated

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the ... Read more

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 29, 2020April 29, 2020

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Announcements

FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and ... Read more

April 28, 2020April 28, 2020

Expressive Language Sampling May Aid Research in Fragile X

News

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

News, syndicated

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

News

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

News

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

News

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