Mary Chapman, features writer —

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

To raise awareness of the rare disease communities and celebrate the creativity of its members, the EveryLife Foundation for Rare Diseases is seeking submissions to the 2020 Rare Artist contest. Established in 2010, the contest is open internationally to patients, caregivers, physicians, friends, or anyone else who…

While no cure currently exists for Lambert-Eaton myasthenic syndrome (LEMS), researchers are working on developing new treatments. Clinical trials are essential steps in this process. Here is information that may help you to decide whether you would like to join a LEMS clinical trial. What is a clinical trial?…

Lambert-Eaton myasthenic syndrome (LEMS) is a rare autoimmune disorder that affects the nerve cells controlling muscle movement. In addition to muscle weakness, fatigue, and eye problems, pain is a common symptom of LEMS. Here are some ways to help you cope. What causes pain in…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

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. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

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 Firdapse production, the company assured its treatment inventories will last at least through June 2021. Catalyst’s U.S.

Because there are only about 400 known cases of Lambert-Eaton myasthenic syndrome (LEMS) in the U.S., it’s understandable for someone who has the autoimmune disorder to feel isolated and misunderstood. Add in symptoms including muscle weakness, fatigue, pain, and eye problems, and motivation some…

Symptoms of chronic diseases such as Lambert-Eaton myasthenic syndrome (LEMS) can present real challenges to everyday life. One way to help cope is through mindfulness. What is mindfulness? Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and the surrounding environment. Rather…

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 we have product available and anticipate no disruptions to our manufacturing facilities, as they are all…