Lambert-Eaton News

March 4, 2021March 4, 2021

MedicAlert, NORD Partner to Help Patients in Emergencies

Lambert-Eaton News

For the more than 25 million Americans living with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS), medical emergencies can pose unique challenges: because these disorders are by definition rare, first responders ... Read more

February 26, 2021February 26, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

COVID-19 News, Lambert-Eaton News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 25, 2021February 25, 2021

Firdapse Developer Catalyst Will Hold Rare Disease Day Event on Feb. 26

Lambert-Eaton News

Firdapse (amifampridine) developer Catalyst Pharmaceuticals is supporting Rare Disease Day 2021 by sponsoring and participating in a virtual Facebook Live event on Friday, Feb. 26, at 4 p.m. ET. The ... Read more

February 22, 2021February 22, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

COVID-19 News, Lambert-Eaton News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Lambert-Eaton News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 11, 2021February 11, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

COVID-19 News, Lambert-Eaton News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 4, 2021February 4, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Lambert-Eaton News

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

January 29, 2021March 3, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

COVID-19 News, Lambert-Eaton News

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to ... Read more

January 28, 2021January 28, 2021

LEMS Treatments Don’t Affect Calcium Channels, Study Finds

Lambert-Eaton News

The molecule 3,4-diaminopyridine (3,4-DAP) — approved as Firdapse and Ruzurgi to treat people with Lambert-Eaton myasthenic syndrome (LEMS) — works to directly induce the release of chemical messengers by binding to potassium ... Read more

January 22, 2021February 23, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

COVID-19 News, Lambert-Eaton 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 ... Read more

January 21, 2021January 21, 2021

Cancer Found After Death of LEMS Patient with Rare Immune-mediated Disorder

Lambert-Eaton News

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 ... Read more

January 20, 2021February 20, 2021

Art Contest Salutes Creativity of Rare Disease Communities

Lambert-Eaton News

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 ... Read more

January 14, 2021January 14, 2021

Rare Skin Cancer Patient’s LEMS Symptoms Ease With Antibody Treatment

Lambert-Eaton News

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 ... Read more

January 11, 2021February 12, 2021

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Lambert-Eaton News

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 ... Read more

January 7, 2021January 7, 2021

Fisher Syndrome Can Co-occur With Asymptomatic LEMS

Lambert-Eaton News

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 ... Read more