News

May 28, 2020May 30, 2020

LEMS-associated Respiratory Problems May Lead to Heart Dysfunction, Case Report Shows

News

Lambert‐Eaton myasthenic syndrome-associated diaphragm weakness and subsequent respiratory problems may impair heart function, a case study shows. The report, “Lambert Eaton Myasthenic Syndrome Presenting as Hypoventilation-Induced Right Heart Dysfunction,” ... Read more

May 25, 2020May 25, 2020

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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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 online medical conference. The session ... Read more

May 21, 2020May 21, 2020

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

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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, and her perspective changed. Riva’s ... Read more

May 18, 2020May 18, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

News, syndicated

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 online during the COVID-19 pandemic. ... Read more

May 14, 2020May 14, 2020

Catalyst Still Expecting Firdapse Approval in Canada in 2020

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Despite the COVID-19 pandemic, Catalyst Pharmaceuticals is still expecting Firdapse (amifampridine) to be approved for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in Canada later this year, the company announced ... Read more

May 11, 2020May 11, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

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The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 7, 2020May 7, 2020

Good Long-term Outcomes Seen in Japanese Study, Regardless of Cancer

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Japanese patients will Lambert‐Eaton myasthenic syndrome (LEMS) show long-term neurological improvements with treatment regardless of whether they also have small cell lung cancer (SCLC), researchers report. The study, “Long‐term prognosis of ... Read more

April 30, 2020April 30, 2020

Lower Electromyography Threshold Improves Accuracy of LEMS Diagnosis, Study Suggests

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Increments, or increases in nerve responses, greater than 60% in electromyography (EMG) recordings upon short periods of exercise are better at diagnosing Lambert-Eaton myasthenic syndrome (LEMS) than the commonly ... Read more

April 29, 2020April 29, 2020

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

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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 23, 2020April 23, 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

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