News

April 29, 2020April 29, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

April 23, 2020April 23, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 16, 2020April 30, 2020

Catalyst Pharmaceuticals Confirms Sufficient Supply of Firdapse

News

In a business update amid the COVID-19 pandemic, Catalyst Pharmaceuticals said it has ample supplies of Firdapse (amifampridine), its treatment for Lambert-Eaton myasthenic syndrome (LEMS). Besides having no known disruptions to ... Read more

April 9, 2020April 9, 2020

Experts Publish Guidance on Managing MG and LEMS During COVID-19 Pandemic

News

A group of experts have provided a series of recommendations for people with myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS) who rely on immunosuppressants to help manage their ... Read more

April 2, 2020April 2, 2020

Catalyst Expects No Supply Problems for Firdapse Due to COVID-19

News

Catalyst Pharmaceuticals says the COVID-19 pandemic is not likely to affect North American supplies of Firdapse (amifampridine), its Lambert-Eaton myasthenic syndrome (LEMS) treatment. “We assure the LEMS community that ... Read more

April 2, 2020April 6, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News, syndicated

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

March 31, 2020March 31, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

News

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 27, 2020March 30, 2020

Building Emotional Resilience When You Have LEMS

News

Emotional resilience is a term used to describe how people respond to changes in life and their ability to adapt to stressful situations. However, a person being more resilient ... Read more

March 26, 2020March 26, 2020

Timely Treatment Can Be Successful for LEMS Linked to Lung Adenocarcinoma, Case Study Suggests

News

Timely cancer treatment helped stabilize a 63-year-old man for more than six years who had lung adenocarcinoma associated with Lambert‐Eaton myasthenic syndrome, unlike the poor prognosis seen in prior ... Read more

March 23, 2020March 23, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

News, Recently Published

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see ... Read more

Pin It on Pinterest