Importance of Advocacy for LEMS Patients
Health advocates promote patient health and access to medical care. If you or a family member has a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS), it could be helpful to learn about health advocacy and how to get involved.
LEMS is a progressive autoimmune disorder that affects the nerve cells that control muscle movement. Its primary symptoms include muscle weakness, fatigue, and pain. About 60% of LEMS cases are associated with small cell lung cancer.
In addition to supporting and promoting patients’ healthcare rights, advocates seek to improve the health and well-being of a disease community. They also aim to develop policy initiatives that prioritize safe, available, and quality care. Advocacy goals include patient-centered care, safe and accessible medical systems, and greater reliance on the patient perspective in healthcare delivery and design.
Regarding policy, advocates identify emerging public health issues that need addressing. They also collect data on current practices related to public health, monitor relevant legislation, and provide feedback on how certain issues affect communities. Advocates can also help to guide health policy reforms.
Advocates may act within organizations, such as public health associations or patient organizations. Advocacy is typically carried out using multimedia platforms, political lobbying, and community mobilization.
Advocacy groups for LEMS
The Muscular Dystrophy Association helps to advocate for those who have neuromuscular diseases such as LEMS.
Global Genes is an advocacy organization that helps patients with rare diseases find and build communities, gain access to information and resources, share data and experiences, become advocates on their own behalf, and connect with researchers, clinicians, and other stakeholders.
The Myasthenia Gravis Foundation of America seeks to facilitate diagnosis and the optimal care of patients affected by myasthenia gravis and related disorders such as LEMS. It aims to improve patients’ lives through education, advocacy, and patient care.
myaware supports patients who have myasthenia and related conditions through disease awareness, support groups, and events.
The American Autoimmune Related Diseases Association seeks to increase awareness of autoimmunity, promote state and national collaborations among health groups that represent autoimmune diseases, and serve as a national advocate for patients and families.
The National Organization for Rare Disorders (NORD) is a nonprofit patient advocacy organization. It works on behalf of people with rare diseases, including LEMS, and the groups that serve them. In addition to organizing the U.S. portion of Rare Disease Day, NORD has advocated for healthcare services such as telehealth, or remote healthcare via telecommunications, which can help people with LEMS gain access to healthcare.
Through an initiative that seeks to establish a Rare Disease Advisory Council in every U.S. state, NORD is also working to empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families.
NORD’s “RareLaunch” training program hosted virtual workshops in 2020 aimed at empowering leaders, including caregivers, patients, and advocates, to start nonprofit organizations and research programs to help rare disease patients.
Eurordis is a similar advocacy group working for rare disease communities across Europe, and the organizer of Rare Disease Day.
Rare Disease Week on Capitol Hill brings together rare disease community members from across the U.S. This year, it will run from July 19 to 22. The event will allow participants to learn about federal legislative issues, meet other advocates, and share their personal stories with legislators.
The federal government-run Rare Diseases Registry Program, called RaDaR, seeks to help patient advocacy groups with limited resources to produce their own disease registries. Such registries are important in understanding disease development and characteristics.
The European LEMS Registry was launched in 2010 to collect data on clinical course, treatment utilization, and the safety and efficacy of LEMS treatments.
Last updated: Feb. 15, 2021
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