Welcome to Living with LEMS Website
18 February 2016

Welcome to Living with LEMS Website

LivingwithLEMS.org is a site for all Lambert-Eaton Myasthenic Syndrome (LEMS) patients, caregivers and family members that offers information, resources and support. The goals of this site are to build connections and offer resources and support to help LEMS patients become informed advocates for themselves and their disease.

Because LEMS patients do not have a dedicated patient advocacy organization presently, Global Genes™, a leading rare disease nonprofit advocacy organization dedicated to eliminating the challenges of rare disease, powers this website.

This website is a collaboration for patient advocacy organizations dedicated to supporting and informing the LEMS community.

Through this project partnership, LivingwithLems.org will share the latest information about narcolepsy and its symptoms and treatments; resources to help patients and families on their journey; and tools to inform educators, employers and the public about LEMS, debunking myths and misconception about this serious and significantly under-diagnosed disease.



  • I had a similar experience when I tried DAP for free from Jacobus Pharmaceutical. I have been getting it since 1995 and no one even knew I had LEMs You should try and get on the Facebook LEMs account.
    4/27/2016 3:18:53 PM
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Share your Story

Help others learn about Lambert-Eaton Myasthenic Syndrome (LEMS) by sharing your story. Your personal journey will help inspire and connect other LEMS patients and inform rare disease stakeholders and the public about this rare, autoimmune disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.