Your Resources
You are not alone! Take advantage of these community outreach programs and national support organizations that can help you connect with other folks managing a life with LEMS.
Outreach Programs for People Living with LEMS
Regional education events hosted by a Patient Access Liaison (PAL)
Coffee Breaks are informal gatherings—hosted by a PAL—where patients and caregivers can meet, live or over Zoom, to discuss topics relevant to their LEMS treatment journey.
Live and online educational events and webcasts
Real Life With LEMS features live local events and live webcasts, hosted by LEMS Patient Ambassadors, where people can share their stories about facing and overcoming the challenges of living with LEMS.
Phone mentoring with fellow LEMS patients
LEMS Connection is a mentoring program that enables people living with LEMS to talk on the phone with other patients about their personal experiences with LEMS and/or treatment.
National Organizations That Offer Support
There are several organizations that support people living with rare diseases, including:
National Organization for Rare Disorders (NORD) is an organization committed to the identification, treatment, and cure of rare disorders through educational programs, advocacy, research, and patient services.
Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connections and resources.
The Lambert-Eaton LEMS Family Association has established a LEMS Patient Registry of medical data to increase awareness, study, and research to expedite more accurate diagnosis and better treatments.
The Myasthenia Gravis Foundation of America (MGFA) is committed to finding a cure for myasthenia gravis (MG) and closely related disorders, improving treatment options, and providing information and support to people with MG through research, education, community programs, and advocacy.
The Muscular Dystrophy Association (MDA) is an organization started by a concerned group of caring families. Since 1950, the MDA has relentlessly pursued their promise to free families from the life-threatening effects of muscular dystrophy and muscle-debilitating diseases.