One of the challenges in dealing with a rare disease is that there may be very few clinicians who have experience with providing care for affected individuals. Often, patient advocacy groups for specific conditions list centers of excellence for care of the disorder.
However, it is possible that there will be only a few such centers for some conditions. It may not be practical to be seen or followed at a site that is distant from home and not covered by a person’s insurance. When considering a specialist, you should feel you can build a rapport with the clinician.
Here are a few other points to consider in selecting a specialist:
- Have they cared for patients with this condition before – and, if so, how many?
- Do they participate in clinical trials or clinical research on the disorder?
- Have they published studies on the disorder?
- Are they affiliated with a relevant patient support group?
The Value of having a Medical Home
Most people with rare diseases have complex healthcare needs that often require the coordination of multiple specialists and diagnostic tests. A medical home, where patients have a dedicated provider and healthcare team, is an important way to ensure that care is coordinated among the various specialists involved in providing care.
The clinic in which your disease specialist and healthcare team provide care may serve as your medical home. This works best if the clinic is located close to where you live. If your disease specialists are located out of town or in another state, the best option for your medical home is probably the primary care physician and clinic in the city where you live.
In either case, a medical home is a place where a disease specialist or primary care physician can follow patients consistently over time and coordinate care with specialists as needed. This is the best way to ensure that patients receive consistent care from a dedicated healthcare team who is familiar with the rare disease diagnosis and health challenges.
The benefits of having a medical home include:
- Patients have a relationship with a personal physician
- A practice-based care team manages your ongoing healthcare needs
- Care is coordinated across care settings and specialists
- You have enhanced access to and communication with your healthcare providers