Lambert-Eaton News

January 11, 2022January 11, 2022

US Court Won’t Rehear Its Ruling Overturning Ruzurgi’s FDA Approval

Lambert-Eaton News

A federal appeals court has denied Jacobus Pharmaceutical’s petition to rehear its prior ruling overturning the U.S. approval of the company’s Ruzurgi to treat children with Lambert-Eaton myasthenic syndrome (LEMS). ... Read more

January 4, 2022January 4, 2022

Global Genes Welcomes Applicants for RARE Meet-Ups Impact Grants

COVID-19 News, Lambert-Eaton News

Global Genes is accepting applications for its 2022 RARE Meet-Ups Impact Grant program, which provides funding for in-person meetings specifically tailored to better educate and assist patients, caregivers, and advocates ... Read more

December 28, 2021December 28, 2021

Prepare to Light Up Buildings for Rare Disease Day 2022

COVID-19 News, Lambert-Eaton News

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the ... Read more

December 21, 2021December 22, 2021

7 US States Launch RDAC Advocacy Groups With NORD Support

Lambert-Eaton News

Seven new U.S. states have launched a Rare Disease Advisory Council, or RDAC, in the last year with the support of the National Organization for Rare Disorders (NORD), an advocacy ... Read more

December 14, 2021December 14, 2021

NORD Shares Online Resources for Rare Disease Patients, Caregivers

COVID-19 News, Lambert-Eaton News

Since late November and embracing the holiday spirit, the National Organization for Rare Disorders (NORD) has been sharing a series of previously exclusive videos from its 2021 Living Rare Living ... Read more

December 7, 2021December 7, 2021

Phase 3 Trial Starts in Japan to Aid Firdapse’s Potential Approval

Lambert-Eaton News

Catalyst Pharmaceuticals has announced its partner DyDo Pharma has launched a Phase 3 registrational trial in Japan to evaluate the safety and effectiveness of Firdapse (amifampridine) to treat Lambert-Eaton myasthenic ... Read more

November 30, 2021November 30, 2021

LEMS in Lung Cancer Patient Given Tecentriq Shows Need for Vigilance

Lambert-Eaton News

The rare case of a man with advanced small cell lung cancer (SCLC) who went on to develop Lambert-Eaton myasthenic syndrome (LEMS) after receiving treatment with Tecentriq (atezolizumab), an immune ... Read more

November 23, 2021November 23, 2021

LEMS Case Tied to Rare Subtype of Lung Cancer 

Lambert-Eaton News

The recent case of a man with Lambert-Eaton myasthenic syndrome (LEMS) linked to a rare type of lung tumor, shows the condition can arise in patients with types other than ... Read more

November 16, 2021November 16, 2021

Catalyst Will Seek FDA Approval of Firdapse for Children

Lambert-Eaton News

Catalyst Pharmaceuticals plans to file an application with the U.S. Food and Drug Administration (FDA) requesting that the use of Firdapse (amifampridine), an approved oral therapy for adults with Lambert-Eaton myasthenic ... Read more

November 9, 2021November 9, 2021

Rare Disease Groups in US Join in Plea for Care Across State Lines

COVID-19 News, Lambert-Eaton News

Over 230 national organizations signed a letter urging all 50 U.S. state governors to “maintain and expand” flexibility with licensure requirements for the duration of the COVID-19 pandemic to ease ... Read more

November 2, 2021November 2, 2021

Immunotherapy Did Not Worsen LEMS in Patient With Lung Cancer

Lambert-Eaton News

A patient with extensive-stage small cell lung cancer and Lambert-Eaton myasthenic syndrome (LEMS) saw a marked decrease in his lung tumors following treatment with a combination of an immune checkpoint ... Read more

October 26, 2021October 26, 2021

RARE-X, Global Genes to Help Collect Rare Disease Patient Data

Lambert-Eaton News

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the ... Read more

October 19, 2021October 19, 2021

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Lambert-Eaton News

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, ... Read more

October 13, 2021October 13, 2021

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

COVID-19 News, Lambert-Eaton News

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC ... Read more

October 12, 2021October 12, 2021

Pooled Trial Analysis Confirms Efficacy, Safety of Firdapse in Adults

Lambert-Eaton News

Firdapse (amifampridine) improved muscle strength and response to nerve cell stimulation in adults with Lambert-Eaton myasthenic syndrome (LEMS), a pooled analysis of six clinical trials demonstrated. The findings showed that ... Read more