Lambert-Eaton News

June 16, 2021June 16, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 15, 2021June 15, 2021

Patient-reported Data Reliable, Dutch Analysis Finds

Lambert-Eaton News

Almost all people with Lambert-Eaton myasthenic syndrome (LEMS) have generalized symptoms at disease onset, according to an analysis of data from a Dutch patient registry. That finding, and others, were ... Read more

June 8, 2021June 8, 2021

Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases

Lambert-Eaton News

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in ... Read more

June 2, 2021June 2, 2021

Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill

Lambert-Eaton News

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in ... Read more

June 1, 2021June 1, 2021

Plasma Exchange May Treat Lung Cancer-linked LEMS and PCD

Lambert-Eaton News

Plasmapheresis, or plasma exchange, may be an effective way of managing small cell lung cancer-associated Lambert-Eaton myasthenic syndrome (LEMS) and paraneoplastic cerebellar degeneration (PCD), combined with peripheral nerve damage, a case ... Read more

May 25, 2021May 25, 2021

RARE-X, Broad Institute to Advance Rare Disease Research

Lambert-Eaton News

RARE-X, a collaborative platform for patient-controlled data collection, global data sharing and analysis, is partnering with the Broad Institute of MIT and Harvard to advance and support the discovery of ... Read more

May 18, 2021May 18, 2021

Early Treatment Key in Rare LEMS Case Linked to Tumor in Larynx

Lambert-Eaton News

The case of a man in whom a neuroendocrine tumor was found to be associated with Lambert-Eaton myasthenic syndrome (LEMS) underscores the importance of early diagnosis and treatment of the ... Read more

May 11, 2021May 11, 2021

LEMS Likely Triggered by Rare Skin Cancer in Case Study

Lambert-Eaton News

Lambert-Eaton myasthenic syndrome (LEMS) may be associated with a rare type of skin cancer called Merkel cell carcinoma (MCC), according to a case study which also highlighted the need for ... Read more

May 4, 2021May 4, 2021

Canadian Agency Recommends Ruzurgi Be Reimbursed with Conditions

Lambert-Eaton News

The Canadian Agency for Drugs and Technologies in Health (CADTH) has recommended that Ruzurgi (amifampridine) be reimbursed for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in individuals 6 and older, ... Read more

April 27, 2021April 27, 2021

Global Data Standards Being Developed for Rare Disease Research

Lambert-Eaton News

Global data standards for conducting research on rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS), are being developed by a new partnership between the Clinical Data Interchange Standards Consortium (CDISC) ... Read more

April 20, 2021April 20, 2021

Quick Approval for COVID Vaccines a Concern, Rare Disease Patients Say

COVID-19 News, Lambert-Eaton News

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine ... Read more

April 19, 2021April 20, 2021

EveryLife Scholarship Fund Open for Adults With Rare Diseases in US

COVID-19 News, Lambert-Eaton News

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a ... Read more

April 13, 2021April 13, 2021

Patients, Caregivers, Loved Ones Sought for Survey

Lambert-Eaton News

The Mighty, a digital health community for people with health challenges and disabilities, is urging Lambert-Eaton myasthenic syndrome (LEMS) patients, their caregivers, and loved ones to complete a short survey that ... Read more

April 6, 2021April 6, 2021

Report Examines Pros, Cons of Orphan Drug Status

Lambert-Eaton News

The Orphan Drug Act (ODA) has spurred the development of treatments for rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS), according to a recent report. Yet, patient advocates say that ... Read more

March 30, 2021March 30, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Lambert-Eaton News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of ... Read more