If you’re a caregiver for a loved one with a rare disease, it’s not presumptive to assume you work tirelessly managing your loved one’s busy appointment schedule, daily stretch routine, and medications. All too often, caregivers find themselves sacrificing their own self-care to manage the enormous amount of time, money, and energy a chronic illness demands.
During the pandemic, many caregivers lost the few hours of freedom they once had while their child was at school or sibling was at work. Spare cash is saved in anticipation of whatever the medical hiccup calls for, so a margarita downtown isn’t budgeted in; getting out into nature for a hike isn’t likely.
Rare Caregiver Respite Program
NORD’s Rare Caregiver Respite Program
, originally established by a donation from biopharmaceutical company Retrophin, was created in honor of the company’s CEO’s, Steve Aselage, retirement. Retrophin specializes in finding treatments for rare disease patients, aiming to improve the lives of the rare community. They wanted to make sure the money wasn’t used to stock up on Costco toilet paper, but rather to provide for the opportunity to finally go on the trip that seemed frivolous or impossible to coordinate.
NORD’s director of patient services Jill Pollander said in a press release how proud the organization is to present services and other resources to patients. This program recognizes the hard work of families and significant others, praising them for their effort and thanking them with a well-earned day off. In her words, “It’s a thank you we are thrilled to be able to give.”
Program Benefits and Eligibility
This unique program is designed to cover up to $500 of expenses annually to cover costs that allow the caregiver a much needed break. Oftentimes, caring for a patient requires a host of skills that make finding a replacement difficult, not easily covered by a normal babysitter or helper. The grant covers the costs of licensed helpers, including a Registered Nurse (RN) care, Licensed Practical Nurse (LPN) care, a Certified Nursing Assistant (CNA), or a Home Health Aide (HHA).
In order to qualify for the grant, the caregiver must show they have been a U.S. citizen or permanent resident for at least six months, additionally demonstrating residency. They also must undergo a financial evaluation of need, in which some of the program’s administrators will verify whether they qualify for the financial assistance. The patient they care for all must have a rare diagnosis, meaning those caring for an undiagnosed or more common* disease are, unfortunately, ineligible.
If those criteria are met, and the grant hasn’t run out of funding, then the caregiver is a shoe in. The award is granted on a first come first serve basis. A NORD Patient Services Representative will guide caregivers through the application process, acting to verify their financial eligibility. Once an application is sent in, it’s processed in up to three business days. After that, the application decision process is incredibly easy, taking around five minutes on the phone.
The project’s founders hope their fund will give a little fun back to caregivers, who’s care for others all too often leaves them with little time for their own needs. It can be easy to sideline rest days, but breaks are part of staying healthy. So don’t miss out. If you’re a caregiver—this is for you.
CEO of Retrophin, Dr. Eric Dube put it well. Dube said,
“Caregivers in the rare disease community spend a significant amount of time, effort, and resources helping their loved ones—and they rarely get to take a break. This program is designed to show appreciation for caregivers’ generosity. I can’t think of a better way to honor Steve Aselage’s work in the rare disease community than to support those who dedicate their lives to caring for patients living with rare disease.”