Patient/Caregiver Resources

Below are some resources available to patients and their caregivers.

Medical Transportation Services

  • Angel Flight: Provides free air transportation for medical appointments. Patients in need of travel assistance can apply for free flights to travel to distant medical centers.
  • Mercy Medical Angels: Offers free flights for patients needing to travel long distances to access treatment, including for rare conditions. They cover air travel through commercial flights, volunteer pilots, and sometimes even ground transportation, depending on the patient’s needs. Find more information on their services and learn how to apply through the Mercy Medical Angels website.
  • SkyHope Pals Service: Offers free medical and compassion flights to rare disease patients and veterans.

Financial Assistance

Housing Assistance

  • Ronald McDonald House: Offers housing support near major hospitals for patients and families traveling for medical treatment. While the programs focus on pediatric care, they also provide support to families of patients managing rare conditions who are traveling far from home for their medical care. Visit Ronald McDonald House to find locations.
  • Healthcare Hospitality Network: HHN connects patients, families, and caregivers with medical lodging across the U.S. HHN’s member facilities offer free or low-cost housing for patients with rare diseases, ensuring they have a place to stay during treatment. To access this assistance please visit their website.

Medication, Prescription, And Nutrition Assistance

  • Partnership for Prescription Assistance: PPA provides a personalized approach to connect patients with reduced-cost or free prescription programs for essential medications.
  • RxAssist: Offers comprehensive information on free and low-cost medication programs, including medications for those with rare diseases.
  • Abbott Ensure Program: Offers specialized nutrition products like Ensure for patients with metabolic disorders. These products provide supplementation for nutrient-dense formulas, which are common in rare diseases like abetalipoproteinemia that involve fat malabsorption.
  • NORD RareCare Patient Assistance Program: Provides financial assistance for medications and nutritional supplementation through its RareCare® program.
  • Academy of Nutrition and Dietetics: NORD often refers patients to the Academy of Nutrition and Dietetics, which provides a database of registered dietitians by location, specialty, or insurance and payment options for rare disease patients, helping them manage conditions that require specialized dietary interventions.

Vaccinations and Immunizations

  • Immune Deficiency Foundation: The IDF provides detailed information on vaccination safety, guidelines, and special considerations for immunocompromised patients. This is particularly important for rare disease patients who may need specialized vaccination schedules. Visit the IDF Vaccination Guidelines to learn more.
  • CDC Guidelines For Immunocompromised Patients: The CDC offers immunization schedules that are adjusted for immunocompromised patients, including those with rare genetic diseases that impact the immune system. These guidelines are critical for ensuring patients receive vaccines in a manner that is safe and effective. Visit the CDC to review special situations for each recommended vaccination.

Rare Disease Education

  • NORD Rare Disease Education Program: The Rare Disease Education Support Program is designed to offer rare disease patients, their families and/or caregivers an opportunity to participate in educational programs and conferences that offer rare disease content. Learn more here. Consider looking at some Rare Lipid Disorders Conferences/Courses to participate in this program.

Clinical Trials

Exercise and Physical Activity

  • MedFit Network: NORD refers patients to the MedFit Netowrk for specialized fitness programs for managing rare and chronic diseases. They offer a directory of fitness professionals trained to create exercise programs specialized for patient’s specific needs and lifestyle changes.

Further Information and Resources