Mouse Model of LGS Created Based on Mutation Found in Patient
Mice created with a single mutation found in a person with Lennox-Gastaut syndrome showed all the hallmarks of the condition, including the same seizure ... Read more
Updates
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COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays ... Read more -
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 ... Read more -
Video Games Connect Chronically Ill Children Isolated at Home, Hospital
Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, ... Read more -
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together ... Read more
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Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better ... -
Epidiolex Safely Lowers Seizure Frequency in Children, 3-Year Study Data Show
When used alongside other anti-epileptic medications, Epidiolex (cannabidiol, CBD) safely reduces the frequency of ... -
NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise ... -
Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak
FFF Enterprises and BioNews announced today that both rare and orphan disease advocates are ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic ...
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