Rare Disease Day: 5 Ways to Find a Doctor or Specialist
It can be difficult to find a doctor who specializes in a rare disease. Here are some resources to help you get started.
There are 7,000 diseases classified as rare, and for those battling these diseases, it can be frustrating trying to find resources and care. Here are five ways to start finding the right care and treatment, as advised by the National Institutes of Health.
1. How to find a healthcare professional specializing in a rare disease
Many disease advocacy groups can help point you in the best direction. the Genetics and Rare Diseases Information Center (GARD) lists thousands of rare diseases. From there, you can find a disease by category and then narrow it down to the subcategory and rare disease. If you still can’t find an organization that helps with a specific rare disease, try searching for the Genetic Alliance and the National Organization for Rare Diseases websites.
2. How to find a specialized treatment center
Contact a rare disease support organization to see if they know of a center of excellence.
the National Cancer Institute has information on how to find a doctor or treatment center if you have a rare cancer.
the Muscular Dystrophy Association (MDA) offers discounted medical services to its members at clinics across the country. To learn more about these services, contact the MDA toll-free at 1-800-572-1717.
3. How to find a genetics clinic
Most primary care physicians can help you establish a genetic testing make an appointment or put you in touch with a genetic counsellor.
Here are three sites you can use to find genetic counseling services near you:
4. How to find a researcher studying a rare disease
Researchers studying a specific rare disease can also be a resource if you are looking for a doctor. You might want to look for researchers who are conducting a clinical trial, as they are often doctors, the National Institutes of Health says on its website. If a researcher doesn’t see any patients, it doesn’t hurt to reach out and ask if they know anyone who does.
Here are some research databases you can access for more information:
5. What to do if you still can’t find a rare disease specialist
Consider calling a doctor at a university health center near you, as they tend to have the latest technology and treatment options.
MedlinePlusa website designed by the National Library of Medicine, might also help you research a rare disease.
You can also call 1-888-205-2311 to speak with a GARD Information Specialist.