Kristina, living with LEMS
Catalyst Patient Outreach Opportunities
Catalyst Pharmaceuticals sponsors several programs and services where patients living with Lambert-Eaton myasthenic syndrome (LEMS) can find support, fellowship, and guidance.
Coffee Breaks are regional education events, hosted by a Patient Access Liaison (PAL), where patients with LEMS and caregivers can learn about different topics relevant to their disease. Coffee Breaks are held live whenever possible or via a Zoom call when necessary. It’s also a great way to connect with other patients in an informal setting.
Contact your PAL for more information.
Our Patient Ambassador Program enables patients to participate in live local events and live webcasts with LEMS ambassadors, who share their stories about facing and overcoming the challenges of living with LEMS. Patients can interact with one another and receive additional information on topics pertinent to the LEMS patient community.
I didn’t know anyone who had LEMS, so it was good to connect with someone who has that experience.
Living with LEMS
Mary Ann took part in several Catalyst Pathways® outreach programs and described the experience as “phenomenal!”
“I had the chance to meet other LEMS patients, made new friends, and had great discussions with a physician and pharmacist. Take advantage of these opportunities!”
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.
NIH Genetic and Rare Diseases (GARD) Information Center provides access to current, reliable, and easy-to-understand information about rare or genetic 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 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.
Watch the Getting Started Video
for step-by-step instructions that make it easy to complete Catalyst Pathways enrollment.