The need for progress in drug development remains as critical as ever with rare diseases affecting more than 25 million Americans. Moreover, 90 percent of the over 7,000 rare diseases are still without an FDA-approved treatment. When there is no treatment available, medical and supportive care costs can be insurmountable; when a treatment does exist, it may be out of a patient’s financial reach.
For more than 35 years, the National Organization for Rare Disorders (NORD) has been leading the fight to improve the lives of people with rare diseases. When financial restrictions make obtaining treatments difficult, an already challenging situation can become even more stressful for rare disease patients and their families. An integral part of NORD’s mission is to help patients access medical care and treatments that without assistance might not be possible.
Since 1987, NORD’s RareCARE program has designed and administered patient assistance programs to help those who are struggling to secure lifesaving or life-sustaining medication and access to care they could not otherwise afford. Now serving over 8,000 patients annually, RareCARE provides a variety of financial assistance programs, including medication, premium and co-pay coverage, medical service, travel and lodging assistance to treatment sites and clinical trials, and expanded access programs for eligible applicants. For people living with a rare diagnosis and their families, these assistance programs can be game-changers.
Support for caregivers
Rare disease doesn’t solely affect patients. Caring for a person living with a rare disease is a considerable commitment that demands significant amounts of time, patience, and dedication. The ability to attend a conference, have dinner with a friend, or simply go to the store can make all the difference to someone who ordinarily is unable to leave a loved one unattended.
NORD’s Rare Caregiver Respite Program is a first-of-its-kind assistance program designed for caregivers (a parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder that enables them to take a well-deserved break while knowing their loved one is safe in capable, professional hands.
Through the Rare Caregiver Respite program, NORD provides financial assistance to eligible caregivers so that an interim caregiver may be secured. Potential applicants can reach out to NORD to determine if they meet eligibility requirements. The grant may be used throughout a calendar year or in a single award.