Mary Chapman, features writer —

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 presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Health advocates promote patient health and access to medical care. If you or a family member has a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS), it could be helpful to learn about health advocacy and how to get involved. About LEMS LEMS is a progressive autoimmune disorder that affects…

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 hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Hydrotherapy, or the use of water exercises, is a complementary therapy that may benefit some people with neuromuscular conditions such as Lambert-Eaton myasthenic syndrome (LEMS). Here is some information about hydrotherapy and how it may be helpful to you. About LEMS LEMS is a progressive autoimmune disorder that affects…

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 for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

For some with Lambert-Eaton myasthenic syndrome (LEMS), massage therapy may help in reducing muscle pain and weakness, as well as in improving flexibility. Here’s more information about the disease and massage therapy. About LEMS LEMS is a progressive autoimmune disorder that affects the nerve cells that control muscle movement.

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 Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

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 disease communities and salute the creativity of its members. Awardees will be able to display their art and…

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 and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Lambert-Eaton myasthenic syndrome (LEMS) is a rare disorder that can mimic other neuromuscular conditions. Because of that and the disease’s slow progression, diagnosis can take some time. If you have LEMS and now know it’s the cause of your symptoms, such as muscle weakness, fatigue, and pain, you…