Getting a rare disease diagnosis, or supporting someone through it, can be overwhelming and make you feel uncertain about what to do next. Facing a rare and misunderstood diagnosis can be deeply unsettling, and it’s common to feel anxious. While these diseases collectively affect millions of people in the United States, they often remain shrouded in complexity and confusion. For many people, just getting the diagnosis is an uphill battle. It’s not unusual to go through years of tests, second opinions and uncertainty before finding an answer. But even when you have a name for your condition, the journey is far from over. The next hurdle, finding high-quality care and understanding your options, can be just as intimidating, leaving you with more questions than answers.
The challenge of finding the right specialist for rare diseases
Rare diseases often require specialized treatment, and finding the right doctor isn’t always easy. Many general practitioners and even specialists may have limited experience with your condition, leaving you feeling unheard, frustrated or stuck.
Rare disease experts are just that—rare. By definition, a rare disease affects fewer than 200,000 people in the United States, so there are only a limited number of doctors with expertise in each condition.
Finding a provider who is an expert in your condition isn’t as simple as a Google search. Reviews and star ratings are often subjective and a reflection of a doctor’s bedside manner or the friendliness of the office staff. While that information is helpful, it doesn’t give much insight into a provider’s experience with your specific condition. If you have a rare disease, it is important to find a provider who stays up to date with the latest research and treatments. When evaluating providers, consider information that reflects this experience, like:
- How many articles has the doctor published in medical journals?
- Has this doctor spoken about my condition at industry conferences?
- Has this doctor participated in clinical trials for my condition?
- Do other doctors refer patients to them?
Connecting people with the best doctor for their condition
When Patrick Howie’s brother was diagnosed with a rare cancer, his eyes were opened to the challenges in finding high-quality medical experts and treatments. It turned out a true expert was available not too much further from his home than the doctor he had been seeing, and switching care made a world of difference. His brother’s experience inspired him to create a platform that uses advanced analytics to help patients—especially those with serious, chronic and rare diseases—find expert care. The result? MediFind.
MediFind uses machine learning technology and proprietary natural language processing algorithms to continuously review medical information across a range of datasets and evaluate providers’ expertise treating specific conditions, based on criteria like their research, how many people with a specific condition they treat and their standing among their peers. Providers are then given an expertise score—elite, distinguished, advanced or experienced—for each specific condition, so it’s easy to know at a glance which doctors are the best for that specific disease. Along with the rating, MediFind also provides detailed physician and practice information, ensuring patients can quickly reach out and connect with the care they need.
With more than 2 million doctor profiles available, MediFind helps people facing rare diseases sift through the noise and find high-quality, expert care without hours of research and searching.
Looking for specialty care for your rare disease? Check out our “Find a Doctor” tool. Just add your location and search by specialty or condition.
