Andrea Lobo, PhD, science writer —

The National Organization for Rare Disorders (NORD) is now accepting applications from patient advocacy organizations — ones focused on supporting people with a rare disease, such as Lambert-Eaton myasthenic syndrome (LEMS) — to implement two new patient registries on its IAMRARE platform. To amplify its set of…

Catalyst Pharmaceuticals is on track to submit an application requesting an increase to the maximum recommended daily dose of Firdapse (amifampridine) — its approved treatment for Lambert-Eaton myasthenic syndrome (LEMS) — from 80 to 100 mg. Currently, the maximum daily dosage of Firdapse is 80 mg for…

The National Organization for Rare Disorders (NORD) has selected nine new Rare Disease Centers of Excellence, bringing to 40 the total number of medical centers that are part of its network. This unique network of medical centers, clinics, and institutes seeks to expand access to multi-specialty care for…

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…

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 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…