Lambert-Eaton News

June 21, 2022June 21, 2022

Colorado Joins 23 States in Opening Rare Disease Advisory Council

Lambert-Eaton News

Legislation to create a Rare Disease Advisory Council (RDAC) in Colorado has passed the state’s Senate and House and was recently signed into law by Gov. Jared Polis, making “the ... Read more

June 14, 2022June 14, 2022

Immune-Related Cancer Therapy Triggers LEMS in Elderly Patient

Lambert-Eaton News

A rare case of Lambert-Eaton myasthenic syndrome (LEMS) triggered by an immune-related cancer therapy was recently described in a case study. Because immunotherapy is relatively new, patients receiving these treatments ... Read more

June 7, 2022June 7, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

COVID-19 News, Lambert-Eaton News

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

May 31, 2022May 31, 2022

Connecticut Agrees to Establish Its Own Rare Disease Advisory Council

Lambert-Eaton News

Lawmakers in Connecticut agreed to set up a permanent Rare Disease Advisory Council (RDAC), an advisory body working to better address the unique needs of people with rare diseases like Lambert-Eaton ... Read more

May 24, 2022May 24, 2022

Congress Moves to Protect FDA Orphan Drug Act Upset in LEMS Ruling

Lambert-Eaton News

Leaders of the U.S. House Energy and Commerce Committee and two senators have taken action to clarify the original intent of the orphan drug act (ODA) that the U.S. Food ... Read more

May 17, 2022May 17, 2022

RNA Molecule, Its Protein May Be Involved in Cancer-related LEMS

Lambert-Eaton News

Blood levels of long non-coding RNA LOC338963 and its potential target AP3B2 — a protein in nerve cells — are significantly increased in people with cancer-associated Lambert-Eaton myasthenic syndrome (LEMS) ... Read more

May 10, 2022May 10, 2022

Real-world Study Reports No New Safety Issues With Long-term Firdapse

Lambert-Eaton News

Long-term treatment with Firdapse is generally well-tolerated by people with Lambert-Eaton myasthenic syndrome (LEMS), according to a study of patient registry data. “The European LEMS registry aimed to collate observational ... Read more

May 3, 2022May 3, 2022

Organizations Rally to Help Ukrainian Rare Disease Patients

Lambert-Eaton News

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ... Read more

April 26, 2022April 26, 2022

Risks, Benefits in Policy Changes for Developing Rare Disease Treatments

Lambert-Eaton News

The potential risks and benefits of several policy changes that could affect the landscape of developing treatments for rare diseases like Lambert-Eaton myasthenic syndrome (LEMS) were discussed in a recent ... Read more

April 19, 2022April 19, 2022

Europe Awaits Proposed New Framework for Sharing Health Data

Lambert-Eaton News

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health ... Read more

April 12, 2022April 12, 2022

Telehealth Added to Latest Digital-friendly NORD State Report Card

COVID-19 News, Lambert-Eaton News

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues ... Read more

April 5, 2022April 5, 2022

Generic Amifampridine SERB Wins EMA Endorsement To Treat LEMS

Lambert-Eaton News

A branch of the European Medicines Agency (EMA) has recommended that Amifampridine SERB, a generic version of Firdapse, be approved to treat adults with Lambert‑Eaton myasthenic syndrome (LEMS) in the ... Read more

March 29, 2022March 29, 2022

LEMS Case Shows Need for Testing To Prevent Treatment Delays

COVID-19 News, Lambert-Eaton News

The case of an 8-year-old girl with Lambert-Eaton myasthenic syndrome (LEMS) who had no signs of a tumor, but had progressive muscle weakness, shows the need for comprehensive analysis and ... Read more

March 25, 2022March 25, 2022

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Lambert-Eaton News

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over ... Read more

March 22, 2022March 22, 2022

Skin Test May Confirm Autonomic Nerve Disorders in LEMS Cases

Lambert-Eaton News

A simple, noninvasive test on the skin, called skin sympathetic response, can be used to confirm impairments in the autonomic nervous system — the non-conscious part of the nervous system ... Read more