Resource List

At this time, there is no patient advocacy organization or support group specifically for the LEMS community. The organizations, government agencies and institutions listed below are working on behalf of LEMS and provide a wealth of trusted information, resources and support for patients and their families.

American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)
AANEM is a physician professional organization dedicated to advancing neuromuscular and electrodiagnostic medicine. AANEM members have the common desire to improve the lives of patients with muscle and nerve disorders such as LEMS.

American Autoimmune Related Diseases Association (AARDA)
AARDA  is the only national nonprofit health agency dedicated to bring a national focus to autoimmunity, the major cause of serious chronic diseases.

American Cancer Society (ACS)
The American Cancer Society  is a nationwide voluntary health organization dedicated to eliminating cancer through fundraising for research, public awareness, advocacy and education. It provides resources to help patients and their families learn about cancer, its causes, risk factors, and detection, diagnosis and treatment options.

American Lung Association (ALA)
ALA  is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy. You can Ask an Expert by calling 1-800-LUNGUSA.

American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM)
(AANEM) is a nonprofit membership association dedicated to the advancement of neuromuscular (NM), musculoskeletal, and electrodiagnostic (EDX) medicine.

Bonnie J. Addario Lung Cancer Foundation (ALCF)

One of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment.

Clinical Trials
ClinicalTrials.gov is a Web-based resource of the National Institutes of Health (NIH) that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions.

Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. GARD provides information culled from a variety of authoritative and medical sources, video tutorials to help navigate and information specialists available by phone.

Global Genes

Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. They work to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. It produces fact sheets, toolkits, podcasts, webinars, documentaries and other resources for patients and their families.

Johns Hopkins Medicine - Health Library
Guide to the diagnosis, treatment and prevention of diseases A to Z

Johns Hopkins is supported by its mission to improve the health of the community and the world by setting the standard of excellence in medical education, research and clinical care. Diverse and inclusive, Johns Hopkins Medicine educates medical students, scientists, health care professionals and the public; conducts biomedical research; and provides patient-centered medicine to prevent, diagnose and treat human illness.

Lems.com
An online resource for patients and their families regarding Lambert-Eaton Myasthenic syndrome.

Muscular Dystrophy Association (MDA)

MDA, is the world’s leading nonprofit dedicated to finding treatments and cures for neuromuscular diseases through funding research, providing comprehensive health care services and support to families, advocacy and fundraising. MDA leads the search for treatments and therapies for LEMS,  provides comprehensive supports and expert clinical care, produces seminars, videos and newsletters and helps patients connect with others affected by LEMS.

Medline Plus
MedlinePlus directs you to information to help answer health questions. MedlinePlus brings together authoritative information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations. MedlinePlus also contains extensive information about drugs and supplements, an illustrated medical encyclopedia, the latest health news, and surgery videos.  Written for patients, their families and friends, MEDLINE PLUS contains information about diseases and conditions, treatments, drugs, supplements, medical definitions and terminology, view videos and illustrations and links to the latest medical research and clinical trials.

Medscape
Medscape's clinical reference is the most authoritative and accessible point-of-care medical reference for physicians and healthcare professionals, available online.  It covers pathophysiology, etiology, epidemiology, and prognosis. Although, not written for consumers, it contains information that will be helpful for your physician to understand and help you understand your condition.

National Cancer Institute (NCI)
NCI is the nation’s leader in cancer research and is one of the National Institutes of Health. It produces patient education publications, a comprehensive database with summaries of the latest cancer information, fact sheets, dictionaries, blogs, newsletters and health communication publications. Information specialists are available to help answer your cancer-related questions in English and Spanish whether you are a patient, family member or friend, health care provider, or researcher by calling 1-800-4-Cancer.

National Institute of Neurological Disorders and Stroke (NINDS)

As one of the National Institutes of Health, NINDS seeks knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease through research, grants, and scientific meetings. It promotes the timely dissemination of scientific discoveries and their implications for neurological health to the public, health professionals, researchers, and policy-makers.

National Organization for Rare Disorders (NORD)
NORD is a U.S. organization that supports the rare disease community in areas including public policy, patient advocacy, patient and professional education, research support, and a patient assistance program.

Orphanet
Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences, however predominantly a resource for European clinicians. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

PubMed
PubMed comprises more than 25 million citations for biomedical literature from MEDLINE, life science journals and online books. Citations may include links to full-text content from PubMed Central and publisher websites.

Other

News and Information about Research

Search online or set news alerts to be sure you are aware of companies that are conducting research into LEMS, so that you can get the latest in information about the disease. Some companies allow you to sign up to receive information updates via email, which patients can decide to opt into, or will post information about new research studies on their pages. To learn about clinical trials for LEMS patients, please visit Treatments.

Facts About Myasthenia Gravis, Lambert-Eaton Myasthenic Syndrome & Congenital Myasthenic Syndromes