New! Rare Disease Caregiver Respite Program

The National Organization for Rare Disorders (NORD)‘s financial-assistance Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult with a documented diagnosis of a rare disorder. The Respite Program provides financial assistance to enable the caregiver to take a break to attend a conference or other event, or to simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or spent in a single use.

NORD stated that awards are granted on a first-come, first-served basis to eligible individuals. The applicant must be willing to undergo a financial evaluation of need, and fall within the Program’s financial eligibility guidelines. A NORD Patient Services Representative will guide the applicant through the process, including verifying financial eligibility using NORD’s Electronic Income Verification System. The application decision process may take as few as five minutes over the telephone. Applications completed and submitted via e-mail, fax or U.S. mail will be processed within three business days of receipt. There is no fee to apply.

Covered respite care can include:
• Registered Nurse (RN)
• Licensed Practical Nurse (LPN)
• Certified Nursing Assistant (CNA)
• Home Health Aide (HHA)

Initial funding for the Respite Program was donated by Retrophin, a biopharmaceutical company specializing in identifying, developing and delivering life-changing therapies to people living with rare disease. The donation was made in honor of its former CEO Steve Aselage’s retirement from the company. NORD’s Respite Program fund continues to accept additional donations to ensure this program is sustained for years to come. For more information and instructions on how to apply, visit NORD’s information page. Additionally, you can obtain more information about NORD’s Respite Program by telephoning NORD at (203) 616-4328 or sending an e-mail to