NORD offering financial support program to cover LEMS costs
Assistance program with yearlong awards open to US patients, caregivers
The National Organization for Rare Disorders (NORD) is offering a financial support program to aid people with Lambert-Eaton myasthenic syndrome (LEMS) and their caregivers.
The LEMS Patient Assistance Program can provide financial support to cover out-of-pocket healthcare costs linked directly to treatment and care for the autoimmune disease, according to a program webpage.
The program, part of NORD’s RareCare initiative, is open to any U.S. citizen or resident of the country for at least six months with a LEMS diagnosis, or to caregivers, who meet certain financial eligibility criteria. Applications are open and support is awarded for a calendar year. A new application in the following year is required for patients or caregivers who continue to need assistance.
“Our RareCare program helps patients obtain life-saving or life-sustaining medication they could not otherwise afford,” the RareCare program page states. “The program also provides financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.”
For example, the financial assistance program may help cover a visit or consultation in a medical office, home nursing costs, and/or health insurance premiums, deductibles, and copayments. Out-of-pocket costs for physician-prescribed medications, lab tests, and imaging services are also contemplated.
If patients require additional supportive therapies — such as physical, occupational, and speech therapy, or nutrition services — these expenses are also eligible for coverage under the program, as long as they are prescribed by their physician.
Financial support program offers wide-ranging aid
In addition to financial support, the RareCare program provides assistance with obtaining medications, getting a diagnosis, and providing knowledge regarding rare diseases. It also helps with assistance with traveling for consultations and clinical trials, support during emergencies, and caregiver respite.
In the U.S., the National Institutes of Health defines a rare disease as one that impacts fewer than 200,000 individuals. More than 10,000 rare diseases are believed to affect more than 30 million Americans, with many of these conditions still lacking approved treatments.
People with rare diseases often incur much higher medical expenses than those with more common ailments. Further, patients with rare conditions frequently face significant delays in receiving a proper diagnosis — it’s often a process that takes several years and requires numerous tests and consultations with various specialists.
NORD was the first nonprofit to represent individuals and families impacted by rare diseases in the U.S. With a history spanning more than 40 years, NORD has been instrumental in promoting care and policy improvements for those affected by these conditions.
The nonprofit has a series of programs aimed at shortening the diagnostic timeline, enhancing access to optimal care and suitable treatments, expediting research, and promoting the clinical development of innovative therapies. Additionally, the organization is dedicated to increasing the participation of historically marginalized communities and ensuring equitable access to healthcare.
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