MedicAlert, NORD Partner to Help Patients in Emergencies

For the more than 25 million Americans living with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS), medical emergencies can pose unique challenges: because these disorders are by definition rare, first responders or emergency personnel may not be aware of a person’s condition, or familiar with the appropriate treatment.

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

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…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

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…