Questions about rare diseases?
1-888-205-2311
Questions about rare diseases?
1-888-205-2311

Diagnostic Journey

For a person with a rare disease, receiving an accurate diagnosis may take several years. Establishing care with an engaged and dedicated primary care provider (PCP) may improve care and shorten the time it takes to reach an accurate diagnosis. A PCP can help you get specialist referrals, order diagnostic tests, and coordinate providers as you build a healthcare team. 
Use this tool by Medicare to find a PCP in your area by inputting your location and keyword "Primary Care Provider."
A PCP that specializes in the care of children is called a pediatrician. Use this tool by the American Academy of Pediatrics to find a pediatrician in your area by inputting your location.

Your Diagnostic Team

How can a diagnostic team help?
Building the right diagnostic team is an important early step in your diagnostic journey. Your diagnostic team is the group of providers who are responsible for helping you to get the right diagnosis. Some providers have advanced medical training in different body systems or types of diseases. This training allows them to provide specific diagnostic procedures and care in their area of expertise. Understanding which providers can best support your diagnostic journey can help you build a strong team dedicated to getting you the correct diagnosis. 
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Where can you learn more about building your diagnostic team?
At this time, GARD does not have enough information to populate our page with the care providers who may specialize in this disease. GARD's Information Specialists may be able to provide you with more resources on how to find providers and build your diagnostic team.

Please contact GARD for individualized support on your diagnostic journey.

Your Diagnostic Team

How can a diagnostic team help?
Building the right diagnostic team is an important early step in your diagnostic journey. Your diagnostic team is the group of providers who are responsible for helping you to get the right diagnosis. Some providers have advanced medical training in different body systems or types of diseases. This training allows them to provide specific diagnostic procedures and care in their area of expertise. Understanding which providers can best support your diagnostic journey can help you build a strong team dedicated to getting you the correct diagnosis. Building the right diagnostic team is an important early step in your diagnostic journey. Your diagnostic team is the group of providers who are responsible for helping you to get the right diagnosis. Some providers have advanced medical training in different body systems or types of diseases. This training allows them to provide specific diagnostic procedures and care in their area of expertise. Understanding which providers can best support your diagnostic journey can help you build a strong team dedicated to getting you the correct diagnosis. 
Read More
imgAltText
Where can you learn more about building your diagnostic team?
At this time, GARD does not have enough information to populate our page with the care providers who may specialize in this disease. GARD's Information Specialists may be able to provide you with more resources on how to find providers and build your diagnostic team.

Please contact GARD for individualized support on your diagnostic journey.At this time, GARD does not have enough information to populate our page with the care providers who may specialize in this disease. GARD's Information Specialists may be able to provide you with more resources on how to find providers and build your diagnostic team.

Please contact GARD for individualized support on your diagnostic journey.
Read More

Rare Disease Experts

How can you find a rare disease expert?

If a diagnosis remains unknown despite extensive efforts by your PCP and specialists, it can be challenging to know what kind of expert you may need or where to find one. A rare disease expert is a care provider that has knowledge or training on specific disease(s), but there may only be a few experts in your state, region, or country. Rare disease experts may work at large research or teaching hospitals. In complex cases, coordinating with a network of experts can help your care provider find the right diagnosis. 
Contact a GARD Information Specialist for help finding an expert.

You can ask your care providers for help finding an expert or use directory tools to search for experts near you. The National Organization for Rare Disorders (NORD) maintains a list of rare disease centers with experts that work together to find treatments and cures for a broad range of rare diseases. Search NORD's Center Directory to find experts near you.

Rare Disease Experts

How can you find a rare disease expert?

If a diagnosis remains unknown despite extensive efforts by your PCP and specialists, it can be challenging to know what kind of expert you may need or where to find one. A rare disease expert is a care provider that has knowledge or training on specific disease(s), but there may only be a few experts in your state, region, or country. Rare disease experts may work at large research or teaching hospitals. In complex cases, coordinating with a network of experts can help your care provider find the right diagnosis. 
Contact a GARD Information Specialist for help finding an expert.

You can ask your care providers for help finding an expert or use directory tools to search for experts near you. The National Organization for Rare Disorders (NORD) maintains a list of rare disease centers with experts that work together to find treatments and cures for a broad range of rare diseases. Search NORD's Center Directory to find experts near you.

Finding the right health care provider or getting the correct diagnosis may prove challenging. GARD can help. Contact a GARD Information Specialist to receive the individualized support you may need.
1-888-205-2311
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
Contact GARD
Use the contact form to send your questions to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.
Finding the right health care provider or getting the correct diagnosis may prove challenging. GARD can help. Contact a GARD Information Specialist to receive the individualized support you may need.
1-888-205-2311
Available toll-free Monday through Friday from 12 pm to 6 pm Eastern Time
(Except: Federal Holidays)
Contact GARD
Use the contact form to send your questions to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond.
About the Disease

Learn about symptoms, cause, support, and research for a rare disease. 

Getting a Diagnosis

Take steps toward getting a diagnosis by working with your doctor, finding the right specialists, and coordinating medical care.

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Last Updated: September 2024