News

A sponsorship deal that grants Chiesi Global Rare Diseases access to BioInnovation Labs (BioLabs)’ network of life sciences coworking facilities in the U.S. is expected to help empower rare disease science and innovation. Under the sponsorship, Chiesi will be able to provide office hours, workshops, or other events…

Minnesota Twins outfielder Michael A. Taylor is stepping up to the plate on behalf of people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). The home run challenge, which seeks to raise more than $150,000 for the rare disease community, will support the nonprofit organization Uplifting Athletes, which…

The National Organization for Rare Disorders (NORD) is hosting community listening sessions for Latino and Spanish-speaking people in the U.S. living with rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS). The series of in-person and virtual meetings — called “Latino/a/x & Hispanohablantes Community Listening Sessions” — will be…

The National Organization for Rare Disorders (NORD) has selected four patient advocacy organizations to join its IAMRARE platform and host patient registries for rare disorders. The goal is to enhance the platform’s volume of patient-reported data, which could result in new therapies and improved care for those with rare…

The Canadian government has committed to invest CA$1.5 billion (about $1.1 billion) over three years to improve access to medicines and ensure better care for people with Lambert-Eaton myasthenic syndrome (LEMS) and other rare diseases. The effort, being called the National Strategy for Drugs for Rare Diseases, also aims…

Catalyst Pharmaceuticals wants to increase the maximum recommended daily dosage of Firdapse (amifampridine), its Lambert-Eaton myasthenic syndrome (LEMS) treatment, to 100 mg. Plans are underway to ask the U.S. Food and Drug Administration (FDA) to approve the new dose, the company announced in a press release detailing its…

For a woman with cancer complicated by Lambert-Eaton myasthenic syndrome (LEMS), treating the cancer with an immune checkpoint inhibitor did not worsen her LEMS, according to a report. Her case suggests that, at least in some instances, immune checkpoint inhibitors may be a treatment option for cancer patients who…

The online platform Patient Voice has opened a campaign, running throughout March, to spotlight the stories of people in Canada with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). This year’s effort under the Canada’s Rare Voices campaign, Patient Voice aims to share stories from patients, caregivers, and clinicians…

Catalyst Pharmaceuticals will mark this year’s Rare Disease Day by ringing the closing bell Feb. 28 at the Nasdaq Stock Market. The ceremony will begin at 3:30 p.m. ET, and can be viewed via livestream. Rare Disease Day, celebrated annually on the last day of February, raises awareness…

Five neuromuscular disease organizations will receive grants worth almost $110,000 in total from the Muscular Dystrophy Association (MDA) to fund key public policy and advocacy initiatives. These grants will fund a diverse range of projects, from surveys and data analyses to device testing, and encompass several different neuromuscular diseases,…