Danbury, CT, March 21, 2025 – The National Organization for Rare Disorders (NORD®) launched NORD® Claim Your Care to help those living with rare diseases navigate a complicated health insurance environment.
NORD Claim Your Care serves as a one-stop digital resource for health insurance-related materials. Designed for the rare disease patient advocacy organizations that comprise NORD Members, as well as members of the rare disease community at large, this website seeks to increase health literacy and knowledge level of health insurance.
“The Moebius Syndrome Foundation is excited for the launch of NORD Claim Your Care, a vital resource for the rare disease community. Navigating health insurance is challenging for anyone, but for individuals with rare diseases and their caregivers, the process can be overwhelming. NORD Claim Your Care will empower our members by providing clear guidance on understanding health insurance, selecting the right plan, and accessing the care they need. 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,” stated Jenny Whitman, Executive Director of the Moebius Syndrome Foundation.
NORD Claim Your Care is an easy-to-use health insurance resource for people living with rare disease who are seeking information on health care coverage options, experiencing difficulty with navigating the many choices that are offered, and needing guidance on appealing coverage denials. It offers a wide range of materials, discusses the different types of insurance and how they work, and includes guidance on how to file appeals when coverage is denied.
“Patients and NORD Member Organizations will be encouraged to use this website to expand their understanding of health insurance. 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. NORD Claim Your Care is intended to be a service for our Members to better assist their constituents,“ says Alli Ward, NORD Director of Membership.
Access NORD Claim Your Care here.
NORD Claim Your Care is sponsored by Takeda Pharmaceutical Company Limited, Novo Nordisk, Inc., CSL Behring, Kyowa Kirin, Inc., and Jazz Pharmaceuticals, Inc.