News

August 27, 2020August 27, 2020

Catalyst, KYE Agree to Commercialize Firdapse for Adult LEMS Patients in Canada

News

Catalyst Pharmaceuticals and KYE Pharmaceuticals have reached an exclusive agreement that will enable KYE to commercialize Firdapse (amifampridine), Catalyst’s oral therapy for adults with Lambert-Eaton myasthenic syndrome (LEMS), in Canada. ... Read more

August 25, 2020August 25, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 20, 2020August 20, 2020

Health Canada Approves Ruzurgi for LEMS Patients Ages 6 or Older

News

Health Canada has approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in individuals ages 6 or older. In Canada, the oral medication will be commercialized by ... Read more

August 19, 2020August 19, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 13, 2020August 13, 2020

Firdapse Approved in Canada to Treat People With LEMS

News

Health Canada has approved the use of oral Firdapse (amifampridine) to treat people with Lambert-Eaton myasthenic syndrome (LEMS). Catalyst Pharmaceuticals‘ request for Firdapse’s approval in Canada was assigned priority review. The oral ... Read more

August 10, 2020August 10, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more

July 23, 2020July 28, 2020

Test Helps Assess Carpal Tunnel Syndrome in LEMS, Case Report Shows

News

A post-exercise facilitation test, which measures muscle activity following voluntary muscle contraction or electrical stimulation, can help identify the effects of carpal tunnel syndrome (CTS) on nerves and muscles ... Read more

July 9, 2020July 9, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 2, 2020July 2, 2020

Scientists Validate New Tool for Estimating Cancer Risk in LEMS Patients

News

A new scoring tool can be used to effectively estimate the risk of developing small cell lung cancer (SCLC) for a person with Lambert-Eaton myasthenic syndrome (LEMS), according to a new ... Read more

June 22, 2020July 28, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

News, syndicated

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more