Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource.
The program seeks to give a well-deserved break to U.S. caregivers — parents, spouses, family members, or significant others — of those living with a rare disorder. Those who qualify may eligible for up to $500 annually to secure respite caregiving.
Financial assistance may cover, for example, care from a registered or licensed practical nurse, a certified nursing assistant, or home health aide. The grant may be disbursed throughout the calendar year or used in a single award.
The program was established in 2019 but, considering challenges wrought by the COVID-19 pandemic, its existence is very timely. With the grant, a caregiver can get away for an event or activity, or simply spend a day away from caregiving.
When the program was announced, Jill Pollander, director of NORD patient services, said the grants would allow the organization to acknowledge the hard work of families, caregivers and others by allowing some time away while knowing their loved one is well-cared-for and safe.
The caregiver must be a U.S. citizen or have been a permanent resident for at least six months. The applicant also must fall within the program’s financial eligibility guidelines. The patient for whom care is being provided also must have a confirmed diagnosis of a rare disease.
Awards are granted on a first-come, first-served basis. A NORD patient services representative will guide the applicant through the process and will verify income electronically. There is no fee to apply.
The application decision process takes about five minutes over the phone. Applications completed and submitted via email, fax, or mail will be processed within three business days. For more information, call 203–616–4328 or email [email protected].
Eric Dube, PhD, CEO of Retrophin (now Travere Therapeutics), which provided initial program funding, reminded the public about the substantial time and resources that caregivers in the rare disease community spend helping their loved ones, while rarely getting a needed break. The program, he added, is meant to recognize the caregivers’ generosity.
NORD is the leading patient advocacy organization dedicated to improving the lives of those with rare diseases and their families.
