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Rare Diseases

Supporting People Living with Rare Diseases and Their Dedicated Caregivers

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Jill Pollander, RN, MSN

Director of Patient Services, National Organization for Rare Disorders (NORD®)

With rare diseases affecting more than 25 million Americans and 90 percent of the over 7,000 rare diseases still without an FDA-approved treatment, the need for research and progress in drug development remains as pressing as ever. When there is no treatment available, the medical and supportive care costs can be insurmountable for a person living with a rare disease. When a treatment does exist, it may be out of a patient’s financial reach.

A way forward

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 and their families. When financial restrictions make obtaining treatment difficult, an already challenging situation can become even more stressful. An integral part of NORD’s mission is to help rare disease patients access medical care and treatments that without assistance might not be possible for them.

Helping more patients get the care they need

Since 1987, NORD’s RareCARE has designed and administered patient assistance programs to help patients who are struggling to secure life-saving 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, and travel and lodging assistance to treatment sites, as well as clinical trials and expanded access programs for eligible applicants.

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Providing care for caregivers

Rare disease doesn’t just impact patients. Caring for a person living with a rare disease is also a generous 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 their loved one unattended.

Earlier this year, NORD® launched the Rare Caregiver Respite Program, a first-of-its-kind assistance program designed for caregivers 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. Examples of what the NORD Rare Caregiver Respite Care Program financial assistance may cover include the following:

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

The fund continues to accept additional donations to ensure this unique program serving all 7,000 rare disease states is sustained for years to come. For more information and instructions on how to apply for the Rare Caregiver Respite program and other NORD patient assistance programs, visit rarediseases.org.

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