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Public Health Challenges of Rare Diseases

Did you know there are over 10,000 genetic and rare diseases? In fact, rare diseases are estimated to affect over 30 million people in the United States. While each disease is rare individually, people with a rare disease often share similar challenges such as accessing information, getting a diagnosis, and finding resources.

The Genetic and Rare Diseases (GARD) Information Center is a public health resource aiming to support people living with a rare disease and their caregivers by providing access to easy-to-understand information that is free and reliable.

Scientific understanding of individual rare diseases continues to grow every day, making it difficult to stay up to date on all information for each disease. To address this public health challenge, GARD aims to continually provide you with current understandable information by modernizing different approaches to this website.

Improvements to rare disease information will be available on GARD beginning Spring 2023.

Modernizing to Improve Access to Rare Disease Information

GARD aims to organize information for over 10,000 rare diseases so that it's easy to use and understand for patients and caregivers. We are translating information from large data sources developed for clinicians and scientists for your needs. Modernizing GARD means adapting how we process information to accommodate rare diseases affecting thousands each year, rare diseases only ever identified in a few cases, and everything in between.

Here, we highlight a few ways GARD aims to improve access to rare disease information.
h3-understand-icon-1
Routine Data Updates
Regularly update available information for thousands of rare diseases at a time.
h3-understand-icon-2
Targeted Guidance
Identify common challenges and important decisions for patients and caregivers on their diagnostic journey.
h3-understand-icon-3
Actionable Health Information
Guide patients and caregivers toward better understanding and effectively using health information.
h3-understand-icon-4
Collaborative Data
Maintain up-to-date data by reviewing many research databases to gather information on many on rare diseases.

Modernizing to Improve Access to Rare Disease Information

GARD aims to organize information for over 10,000 rare diseases so that it's easy to use and understand for patients and caregivers. We are translating information from large data sources developed for clinicians and scientists for your needs. Modernizing GARD means adapting how we process information to accommodate rare diseases affecting thousands each year, rare diseases only ever identified in a few cases, and everything in between.

Here, we highlight a few ways GARD aims to improve access to rare disease information.
h3-understand-icon-1
Routine Data Updates
Regularly update available information for thousands of rare diseases at a time.
h3-understand-icon-3
Actionable Health Information
Guide patients and caregivers toward better understanding and effectively using health information.
h3-understand-icon-2
Targeted Guidance
Identify common challenges and important decisions for patients and caregivers on their diagnostic journey.
h3-understand-icon-1
Collaborative Data
Maintain up-to-date data by reviewing many research databases to gather information on many on rare diseases.

Get Help

You can contact GARD by phone or by filling out our contact form. Get individualized help with:

  • Finding or understanding information about a rare disease.
  • Navigating information on getting a diagnosis for a rare disease.
  • Discovering resources, disease experts, or clinical studies for a rare disease.
Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor's advice.

Phone

Available Monday through Friday
12 pm to 6 pm Eastern Time
(Except: Federal Holidays)

Toll Free:

1-888-205-2311

Contact Form

Use the contact form to send your question to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond. 

Contact Form

Get Help

You can contact GARD by phone or by filling out our contact form. Get individualized help with:

  • Finding or understanding information about a rare disease.
  • Navigating information on getting a diagnosis for a rare disease.
  • Discovering resources, disease experts, or clinical studies for a rare disease.
Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor's advice.

Phone

Available Monday through Friday
12 pm to 6 pm Eastern Time
(Except: Federal Holidays)

Toll Free:

1-888-205-2311

Contact Form

Use the contact form to send your question to a GARD Information Specialist.

Please allow 2 to 10 business days for us to respond. 

Contact Form