News

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

A positive SOX1 antibody test led to a post-mortem small-cell lung carcinoma (SCLC) diagnosis in a man with paraneoplastic cerebellar degeneration (PCD) and Lambert-Eaton myasthenic syndrome (LEMS), a case study reports. “To our knowledge, this is…

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare disease communities and salute the creativity of its members. Awardees will be able to display their art and…

Treatment with immunoglobulins, or antibodies — proteins that help fight off infections — successfully reduced symptoms of Lambert-Eaton myasthenic syndrome (LEMS) in a woman receiving immunotherapy for a rare type of skin cancer. Her case suggests that immunoglobulin therapy may prove an effective option for treating patients with…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Symptoms of Fisher syndrome can lead doctors to also diagnose asymptomatic Lambert‐Eaton myasthenic syndrome (LEMS), according to a case study in Japan. The report, “A case presenting electrophysiological and immunological characteristics of Fisher syndrome and Lambert‐Eaton myasthenic syndrome,” was published in the journal Muscle & Nerve.

A case report describes Lambert-Eaton myasthenic syndrome (LEMS) and cerebellar degeneration — deterioration in the cerebellum, a key brain area for balance and coordination — in a woman with neuroendocrine cancer, likely induced by Opdivo (nivolumab) treatment.  …

The ice pack test — a simple procedure in which a bag filled with ice is placed over the eyelids for a few minutes — eased ptosis (upper eyelid drooping) in a man with Lambert-Eaton myasthenic syndrome (LEMS), according to a recent case report. These findings suggest this test…

The Muscular Dystrophy Association (MDA) is encouraging the U.S. Centers for Disease Control and Prevention (CDC) to recommend that people living with neuromuscular diseases (NMDs) have early access to any federally approved COVID-19 vaccine. The MDA made its request in a letter to members of the…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…