NORD® Rare Disease Centers of Excellence – Patient & Caregiver FAQs

In the FAQ below, the word “patient” means:

  • The person diagnosed with a rare disease or suspected to have a rare disease.
  • The patient may be you or a loved one such as a child, spouse, partner, sibling, parent, or close friend.

Please see the List of Centers and call the closest NORD RD CoE to make an appointment. People wanting to be seen at a NORD RD CoE should talk with their doctors first, since the staff at the doctor’s office may be able to help set up an appointment at a NORD RD CoE.

If there is no NORD RD CoE in the patient’s home state, here are a few things to do:

  1. Using the List of Centers, choose the Centers that are closest to where the patient lives or will be easiest for the patient to otherwise access. For example, if the patient has family or friends who live near a Center and could offer a place to stay.
  2. Talk with the patient’s doctor about wanting to be seen at a NORD RD CoE and share the list of the preferred Centers. The doctor’s office can help find out if any of the Centers are within the patient’s health insurance network. The doctor may be able to suggest which Center would be best for the patient. The office may know the steps to take to have the visit covered by health insurance.
  3. Call the patient’s health insurance to see if a visit to one of the preferred Centers will be covered. If none of the Centers are within the health insurance network, ask if there are steps that can be taken to receive insurance coverage for diagnostic assessment and/or care at an out-of-network Center.
  4. Check the Centers website to see if the patient’s health insurance is accepted. Most large medical institutions have this information available under “Patient Resources”, “Patient Guide”, or “Billing”. If you can’t find the information or if the patient has Medicaid, call the Center directly and ask to speak with the Billing Department and explain that the patient is from out-of-state.
  5. Call the Center and ask to speak with the Financial Assistance Department. Ask if there are financial assistance programs for patients who do not have insurance or whose health insurance will not cover the visit. A Center may have a medical social worker who can help you find financial help. Most Centers have this type of information listed on their website, usually under “Patient Resources”, “Patient Guide”, or “Billing and Financial Assistance”.

Please see the List of Centers and contact the number provided under each Center.

Because each Center has their own scheduling and referral procedures, we recommend reaching out directly to the Center to ask if a referral is needed.

In addition, sometimes the patient’s health insurance plan may require a referral even if the Center does not.  So, it is always important to talk with the patient’s primary care doctor and health insurance provider before making an appointment without a referral.

Each Center has their own billing procedures and health insurance requirements. To learn more, you can:

  1. Call the Center directly to find out if the Center allows appointments without insurance. You can ask to talk to the Billing and Financial Assistance Department. In some cases, the Center may require a payment before the patient can schedule the appointment if the patient is uninsured.
  2. If the Center requires health insurance or the patient is unable to pay the cost of the visit in advance, you can ask if there are any financial assistance programs. Some Centers are able to set up payment plans.
  3. Ask if the Financial Assistant Department has medical social workers who can help you find other resources that provide financial assistance.
  4. Many Centers have information about financial assistance for uninsured and underinsured patients on their websites. You can usually find this information under “Patient Resources”, “Patient Guide” or “Billing and Financial Assistance”.

Patients already being seen at a NORD RD CoE may not notice any changes right away. The patient’s medical care team may have some of the top specialists in the country who are already talking with other top specialists and researchers.

In the future, as the Centers gets more connected, specialists will be able to share expert information more easily. This will help patients at all the Centers receive the highest quality of care.

Each NORD RD CoE was chosen because the Center has the specialists and knowledge needed to diagnose and care for almost every rare disease. Specialists at the NORD RD CoE will often call each other when they do not have a lot of experience caring for patients who have a specific rare disease. All NORD RD CoE sites strongly suggest going to the closest Center within the patient’s state or insurance network. The goal is to have the knowledge travel instead of the patients.

However, deciding if you or your loved one should travel to be seen by a specific specialist in-person is a personal decision. Talk with the patient’s doctors and medical care team to decide together if an in-person visit with the specialist might be helpful.

The ability to be seen at a NORD RD CoE in another state may depend on a patient’s ability to cover the expenses of the appointment if the patient’s health insurance does not. Although there are some programs that can provide financial assistance for travel, other non-travel costs may make it difficult to access care at distant sites.  These costs should be taken into consideration before making an appointment.  Added costs may include loss of time at work or school, arranging care for family members, meals, and other travel challenges such as portable medical equipment.

All Centers offer telehealth appointments, but due to hospital, health insurance, or state rules, telehealth appointments may only be available for follow-up appointments and within the same state as the Center. You or the patient’s local doctor can call the Center to ask if telehealth appointments are available for first visits or consultations. Make sure to tell the Center if the patient lives in a different state.

Getting a diagnosis for a rare disease can be a very hard and take many years. Going to a NORD RD CoE may help shorten the time to diagnosis.

Many of the Centers do have special programs for undiagnosed patients. However, as a reminder, each Center and their special programs have their own policies and procedures for seeing patients.

To learn more, you can:

  • Prepare before you call. Make lists of:
    • Current symptoms of most concern to the patient and their medical care team.
    • Medical tests the patient has had to try to find the diagnosis.
    • Type of specialists the patient has already seen.
  • Reach out to the NORD RD CoE in the patient’s state or closest to where the patient lives. To help the Center guide you, share the information in your lists.
  • Ask if there are any special programs for undiagnosed patients. If the Center has a special program, ask if the patient may be eligible for the program and what steps need to be taken.

We understand this is a very challenging time for patients and their families. Sadly, even the top medical experts are still not able to diagnose every patient, but as our knowledge and technology grows, more people will be able to be diagnosed. NORD RD CoE are working hard to find ways to shorten the length of time to diagnosis and to be able to provide more patients with a diagnosis.

NORD RD CoE medical care teams are among the best in the world.  They understand the complex care needed for many different types of rare diseases and are prepared to find the best path to diagnosis and treatment. Together, with the patient and patient caregiver(s), they will build a care and treatment plan suited for each patient’s unique needs.

All NORD RD CoE offer:

  • Multi-care specialty teams working together
  • Clinical care and research teams working together to bring better treatments to patients.
  • Access to clinical trials or, if interested, other ways patients can become involved in research to add to the information known about their disease.

This network is being built so that doctors, medical care teams, and researchers at different Centers can work together more easily and closely. As the network grows stronger, patients being seen at one Center will be able to benefit from the expertise of many other doctors and researchers, including those at other Centers in the network.