NORD launches website to help people navigate health insurance
NORD Claim Your Care is designed for those with rare diseases
The National Organization for Rare Disorders (NORD) has launched NORD Claim Your Care, a digital tool meant to help people living with rare diseases, including aromatic l-amino acid decarboxylase (AADC) deficiency, navigate health insurance.
NORD Claim Your Care is an online resource for people with rare diseases in the U.S. to understand health insurance, select the right healthcare coverage plan, and access care. It also provides guidance on how to appeal insurance coverage denials and dealing with health insurance-related information and resources.
“Patients and NORD Member Organizations will be encouraged to use this website to expand their understanding of health insurance,” Alli Ward, NORD director of membership, said in an organization press release. “NORD’s 360 member organizations, all representing individuals with very unique rare diseases, will have the opportunity to share the specifics about the multiple insurance options available by directing them to one convenient location.”
The program includes a variety of tools and resources designed to increase health literacy and knowledge related to health insurance for people living with rare conditions and their families. It includes materials on health insurance coverage basics and addresses problems that may arise when using health plans.
Tool kit includes guides to understanding health insurance
It includes a health coverage tool kit with guides to understanding health insurance and how to use it, what different terms related to health care and insurance mean, or how to make informed decisions about insurance plans. Particularly, it may help patients learn about insurance benefits and costs that may help them choose the best health insurance plan for their needs.
Choosing the right health coverage is a decision that impacts both a patient’s health and financial security. The tool also provides information on several types of medical insurance that are available, from public programs like Medicaid and Medicare, to private insurance plans and those sponsored by employers.
Additional resources include those related to insurance benefits and enrollment, prior authorization that must be approved before certain medical services or treatments are provided, how to deal with bills that are not covered by insurance, or avoiding losing coverage if, for instance, patients lose their jobs.
“Navigating health insurance is challenging for anyone, but for individuals with rare diseases and their caregivers, the process can be overwhelming,” said Jenny Whitman, executive director of the Moebius Syndrome Foundation, which helps people with the rare disease Moebius syndrome. “Our goal is to ensure that no one feels alone in this journey, equipping them with the knowledge and support necessary to make confident, informed decisions.”
NORD Claim Your Care is sponsored by Takeda Pharmaceutical, Novo Nordisk, CSL Behring, Kyowa Kirin, and Jazz Pharmaceuticals.
Novo Nordisk is exploring a gene-editing technology for AADC deficiency in collaboration with Life Edit Therapeutics.
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