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Thank you for visiting the new Genetic and Rare Diseases (GARD) Information Center Website

We are in the process of modernizing the GARD website, so we can keep up with rare disease research and improve the experience of our users.

Where are we in the process?
We transferred the old GARD website and Contact Center to this new website. Now, we are in the process of rebuilding this website to offer more information on more rare diseases!

The new GARD website will:
  • automatically pull available information from trusted rare disease sources
  • provide information about diseases in a clear and concise format
We expect our demonstration website to launch in Spring 2023, and then we will increase the amount information available.

Trusted Source for Evidence-Informed Information

The GARD website gathers information about rare and genetic diseases from reliable research databases to make it easier for patients, families, and caregivers to find the information they seek. Each disease page also lists resources and organizations that help support the needs of children and adults living with a rare disease. 
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About the Disease
Learn about symptoms, causes, and other disease specific information.
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Living with the Disease
Find information, organizations, and resources that support the needs of patients, families, and caregivers.
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Getting a Diagnosis
Understand the steps to getting a diagnosis, types of specialists that may be involved, and where to go next for help.
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Research
Discover the importance of research and how to find clinical trials and other research opportunities.

Trusted Source for Evidence-Informed Information

The GARD website gathers information about rare and genetic diseases from reliable research databases to make it easier for patients, families, and caregivers to find the information they seek. Each disease page also lists resources and organizations that help support the needs of children and adults living with a rare disease. 
h3-understand-icon-1
About the Disease
Learn about symptoms, causes, and other disease specific information.
h3-understand-icon-3
Getting a Diagnosis
Understand the steps to getting a diagnosis, types of specialists that may be involved, and where to go next for help.
h3-understand-icon-2
Living with the Disease
Find information, organizations, and resources that support the needs of patients, families, and caregivers.
h3-understand-icon-1
Research
Discover the importance of research and how to find clinical trials and other research opportunities.
Explore our disease pages

You Are Not Alone

Although rare diseases are rare individually, there are many different rare diseases. This means that about 1 in every 10 people have a rare disease. GARD Contact Center has been helping rare disease patients, their families, and caregivers find resources and information since 2002.

Diseases

How many rare diseases are there?

More than 7,000

People

How many people are living with a rare disease in the U.S.?

25 to 30 million

Contacts

How many calls and emails has GARD answered?

More than 110,000 to date

You Are Not Alone

Although rare diseases are rare individually, there are many different rare diseases. This means that about 1 in every 10 people have a rare disease. GARD Contact Center has been helping rare disease patients, their families, and caregivers find resources and information since 2002.

Diseases

How many rare diseases are there?

More than 7,000

People

How many people are living with a rare disease in the U.S.?

25 to 30 million

Contacts

How many calls and emails has GARD answered?

More than 110,000 to date

Contact Us

You can contact GARD by phone or our contact form. You may wish to call if:
 

  • You are having a hard time finding a genetic or rare disease on our website
  • You need help finding more information, resources, specialists, or clinical studies
  • You or someone you are caring for is undiagnosed
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

Contact Us

You can contact GARD by phone or our contact form. You may wish to call if:
 

  • You are having a hard time finding a genetic or rare disease on our website
  • You need help finding more information, resources, specialists, or clinical studies
  • You or someone you are caring for is undiagnosed
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