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Nov. 4, 2019

TOPIC: Featured News, Patients & Members

November is National Family Caregivers Month

Posted by Valaree DonFrancesco

Did you know that November is National Family Caregivers Month? It’s a time to recognize family caregivers for their selfless devotion and dedication to supporting loved ones. NORD’s Rare Caregiver Respite Program is a first-of-its-kind assistance program that provides that well-deserved recognition, giving caregivers of rare disease patients the opportunity for a much-needed respite. NORD designed this program for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder because we know that caring for a loved one is a generous gift that demands significant time, attention, patience and dedication. We are gratified to provide financial assistance that will enable qualified caregivers to take a break. 

At NORD, we are proud to have provided a variety of services and assistance to patients for over 35 years. The Rare Caregiver Respite Program acknowledges the hard work that families and significant others do every day by enabling them to take some time away from caregiving while ensuring their loved one is being well cared for. It’s a thank you we are thrilled to be able to give.

NORD’s Program provides financial assistance to eligible caregivers covering up to $500 annually so that a respite caregiver may be secured to care for a loved one temporarily. Those wishing to apply can reach out to NORD to ascertain if they meet eligibility requirements. The grant may be used throughout a calendar year or in a single award. Examples of what the NORD Rare Caregiver Respite Care Program financial assistance may cover include:


o    Registered Nurse (RN) care

o    Licensed Practical Nurse (LPN) care

o    Certified Nursing Assistant (CNA) / Nursing Assistant

o    Home Health Aide (HHA)

o    Non-professional caregiver


To learn more please about the Rare Caregiver Respite Program, click here.


Beth, caregiver for her daughter Danielle, recently shared how she plans to use the respite award.

“My daughter Danielle and I travel to visit my mom and reconnect with family and friends. Our private insurance nursing benefit has been exhausted so we rely on Medicaid to pay for night nursing at home. Danielle is not a watcher. More of a doer so she wants to go go go all day,” Beth explains. “It’s hard for me to go go go with her all day and be responsible for her overnight as well. Medicaid won’t pick up night nursing on our visit because it is out of state. So the respite grant will pay for someone to monitor Danielle and her equipment while I get some sleep. It will allow us to vacation as hard as we can!”