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Grants Offer Caregivers a Day of Rest

Those caring for a family member or significant other with a rare disease — one that affects fewer than 200,000 Americans — may be eligible for a grant allowing them to take some time off.
BY Beth Fand Incollingo
PUBLISHED October 23, 2019
Those caring for a family member or significant other with a rare disease — one that affects fewer than 200,000 Americans — may be eligible for a grant allowing them to take some time off.

The Rare Caregiver Respite Program, run by the National Organization for Rare Disorders (NORD), provides money to hire medical personnel so that caregivers can attend conferences or simply have an afternoon or evening off. The assistance is granted in increments of $500 annually to those who qualify and can be used all at once or throughout the year.

Those eligible are U.S. citizens or permanent residents who meet the program’s financial eligibility guidelines and are caring for a patient who has received a confirmed diagnosis of a rare disease. Grants are given on a first-come, first-served basis and can be used to pay for a registered nurse, licensed practical nurse, certified nursing assistant or home health aide.

Caregivers apply with the help of a NORD patient services representative, and decisions about whether the organization will grant funds are made quickly.

To learn more or apply, call NORD at 203-616-4328 or email CaregiverRespite@rarediseases.org.
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