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June 20, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

June 17, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 17, 2019June 17, 2019

Catalyst Expands Firdapse’s License Coverage to Include Japan, Sues FDA Over Ruzurgi’s Approval

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Catalyst Pharmaceuticals has taken the first step to expand its commercial territory to cover Japan and get Firdapse (amifampridine phosphate) approved as a treatment for Lambert-Eaton myasthenic syndrome (LEMS) ... Read more

June 3, 2019June 3, 2019

Patients with SCLC-LEMS Easier to Diagnose, More Likely to Have Ataxia, Study Says

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Patients who have Lambert-Eaton myasthenic syndrome (LEMS) associated with small cell lung cancer (SCLC) are easier to diagnose and have a higher prevalence of ataxia (loss of movement control) ... Read more

May 27, 2019May 27, 2019

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

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RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site ... Read more

May 15, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

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With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been ... Read more

May 8, 2019May 8, 2019

Ruzurgi Approved in United States as First Treatment for Children with LEMS

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The U.S. Food and Drug Administration (FDA) has approved Ruzurgi (amifampridine) for the treatment of children ages 6–17 with Lambert-Eaton myasthenic syndrome (LEMS). The approval makes Ruzurgi, developed by ... Read more

April 22, 2019April 22, 2019

SCLC Patients with LEMS Have Better Long-term Survival, Study Suggests

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Patients who have Lambert-Eaton myasthenic syndrome (LEMS) associated with small cell lung cancer (SCLC) seem to have better long-term survival than cancer patients without this neurologic syndrome, a study ... Read more

April 17, 2019April 26, 2019

LEMS Prevalence in U.S. Similar to Europe, Large U.S. Study Reports

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Lambert-Eaton myasthenic syndrome (LEMS) has a similar prevalence and incidence in the U.S. compared with European populations, and most patients get better with therapy, particularly with 3,4-DAP – the ... Read more

April 8, 2019April 8, 2019

Paraneoplastic Cerebellar Degeneration and LEMS Linked to Rare Throat Tumor, Case Report Shows

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A case of paraneoplastic cerebellar degeneration (PCD) and Lambert-Eaton myasthenic syndrome (LEMS) was associated with a hormone-related tumor in a patient’s oropharynx, or the middle part of the throat, ... Read more

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