NORD’s Patient Assistance Program helps cover Batten healthcare costs
Emergency relief fund also can help with unexpected nonmedical bills
With its RareCare Patient Assistance Program, the National Organization for Rare Disorders (NORD) helps to cover healthcare costs that aren’t paid by health insurance — and the program is available to people with Batten disease in the U.S. who may be struggling to pay bills directly related to treatment and care.
Eligible costs include but are not limited to doctor visit bills, deductibles, and out-of-pocket expenditures not covered under health insurance plans. Patients can also seek funding for prescribed medications for Batten, lab and imaging tests, supportive treatment services, home nursing, and medical equipment.
U.S. citizens and residents living in the U.S. for six months or more, with a diagnosis of Batten disease and who meet financial requirements, can apply to the program for assistance. Caregivers may also apply on behalf of eligible patients. Awards are given for one year, and patients can reapply for each year they need support.
Additionally, NORD, a Massachusetts-based nonprofit, offers a Batten Disease Emergency Relief program that’s now accepting applications, according to the website. This program helps cover unexpected or emergency nonmedical costs of goods and services needed for daily life. Such expenses may include costs related to car or home repairs, appliance fixes, or even high utility bills due to lost wages from the disease or caregiving.
Patients and caregivers can apply for other types of emergency costs that will be considered on a case-by-case basis, depending on individual needs, to help ease the burden of financial hardship related to unexpected nonmedical costs.
NORD program has provided over $170M in patient assistance
Batten disease is a rare genetic condition that affects the brain and nervous system. Symptoms usually begin in childhood, after apparently normal early development. As the disease progresses, symptoms such as vision loss, seizures, and problems with movement and coordination worsen, and the need for care increases.
Like Batten disease, other rare diseases also leave a large footprint on healthcare, with patients and their families facing high out-of-pocket costs. Such expenses can limit patients’ access to healthcare and their ability to pay for quality services that may help with living longer and better lives.
The Batten Disease Patient Assistance Program is one of NORD’s RareCare Patient Assistance Programs, developed to help people living with rare diseases access diagnostic tests and medications, travel opportunities, educational resources, and respite care for caregivers.
“Our RareCare program helps patients obtain life-saving or life-sustaining medication they could not otherwise afford. 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,” NORD states on its program webpage.
Altogether, NORD has provided $174 million in financial support since 2018, according to its website. The nonprofit also has reimbursed nearly 2 million travel miles, and connected $2.5 million in emergency relief to patients since 2015.
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