How Can GARD Help Patients and Families with a Rare Disease?

Updated

GARD (the Genetic and Rare Diseases Information Center) helps patients and families by providing free, reliable, and easy-to-understand information about rare diseases through two channels: a searchable disease database on its website and a Contact Center staffed by Information Specialists who offer individualized help. It is best suited for people who are navigating a rare disease diagnosis or seeking information and resources, and it is explicitly not a substitute for advice from a health care provider.

What GARD Is and Who It Serves

Progress in data science and genetics has led experts to agree that more than an estimated 10,000 rare diseases affect millions of people in the United States. Each disease may be rare individually, but people with rare diseases often face similar challenges—accessing information, getting a diagnosis, and finding resources. GARD's stated mission is to help the rare disease community meet these common challenges by providing free access to reliable and easy-to-understand information, supported both through its website and through dedicated Information Specialists in its Contact Center.

How GARD Can Help You

GARD organizes its help around a few practical entry points:

  • Browse by Disease — Search the database to find information about thousands of rare diseases.
  • Contact GARD — Fill out the contact form to get help from an Information Specialist.
  • Find Support — Discover everything from where to find financial aid to tools that help you communicate with your health care provider.
  • Connect with Patient Organizations — Connect with other patients and families to build a community of support, learn about the latest treatments, care centers, and opportunities to participate in research.

What Information Specialists Can Do

GARD Information Specialists offer individualized help to connect you with information and resources. According to GARD, they can help you:

  • Find or understand information about a rare disease.
  • Navigate information throughout the diagnostic journey.
  • Discover resources, disease experts, or clinical studies for a rare disease.

If you use the contact form to send your question, GARD asks that you allow 2 to 10 business days for a response.

Where to Start

Your situation Suggested starting point
You have a disease name and want background information Browse by Disease to search the database
You are still searching for a diagnosis Contact GARD for help navigating information during the diagnostic journey
You need practical or financial help Find Support for financial aid information and tools for communicating with your health care provider
You want to connect with others and learn about research Connect with Patient Organizations

An Important Limit

GARD states that it provides information about rare diseases for your general knowledge and is not a substitute for the advice of a health care provider. Use it to understand a condition, prepare questions, and locate resources—then bring those findings to your care team for decisions about diagnosis and treatment.