Caregivers who help individuals with rare diseases are often unpaid family members who rarely get a day off. In recognition of the significant time, attention, patience and dedication that caring for a loved one with a rare disease demands, the National Organization for Rare Disorders (NORD) recently launched the Rare Caregiver Respite Program. Designed to provide caregivers of rare disease patients a much-needed respite, the new program provides financial assistance to enable the caregiver a well-deserved break.

Through the new relief program, NORD will provide financial assistance to eligible caregivers covering up to $500 annually to pay for a respite caregiver to care for a loved one. The grant may be dispersed throughout a calendar year or be used in a single award. Examples of what the NORD Rare Caregiver Respite Care Program financial assistance may cover include:

  • Registered Nurse (RN) care
  • Licensed Practical Nurse (LPN) care
  • Certified Nursing Assistant (CNA) / Nursing Assistant
  • Home Health Aide (HHA)

For more information and instructions on how to apply, visit