A rare disease with robust support
Lambert-Eaton myasthenic syndrome (LEMS) affects approximately 3,000 people in the United States.
THAT’S 3,000 OUT OF ABOUT 300 MILLION.
That can make a rare disease feel even rarer and may make you feel alone.
But what happens when you bring all of those patients together in one place? And not just patients, but caregivers, counselors, and healthcare professionals. Suddenly, the room is filled with other people who are really interested in learning and sharing all that they know about LEMS.
That’s why LEMS Aware was created—to provide a central gathering place where the LEMS community can share helpful information, lifestyle tips, and inspirational stories that may make living with LEMS a little easier.
On this page, you’ll have the opportunity to join the LEMS Aware community on Facebook, connect with a LEMS mentor, and discover advocacy organizations that provide for those affected by LEMS and other neuromuscular disorders.
JUST HAVING SOMEONE TO TALK TO IS A BIG DEAL.
Jamie makes a connection
Jamie talks about how isolating LEMS can be and how connecting with others in the LEMS community made a big difference in her life.
Join the LEMS Aware Community
Make a LEMS Connection
Connect with a mentor who knows what you’re going through
Are you living with LEMS?
Ever wish you could talk one-on-one with another LEMS patient? You can! LEMS Connection is a telephone hotline that connects LEMS Aware community members with experienced patient mentors who are also living with LEMS.
Through LEMS Connection, you can:
Ask the questions that you can’t ask anyone else
Learn insights that only another LEMS patient would know
Talk openly about your fears and frustrations
Patient Support Organizations
There are several organizations that provide support for people living with LEMS and other rare diseases. Check out there websites for more information that you can use.
The Lambert-Eaton LEMS Family Association is an organization dedicated to representing and advocating for people with LEMS, their families, and the larger LEMS community regarding state and federal laws and regulations. Their mission is to foster research and build the larger LEMS community through gatherings, outreach, and education.
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.
NIH Genetic and Rare Diseases (GARD) Information Center provides access to current, reliable, and easy-to-understand information about genetic and rare diseases.
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 a caring group of families dedicated to the relentless pursuit of a promise to free families from the life-threatening effects of muscular dystrophy and muscle-debilitating diseases.