About Ataxia-telangiectasia

ABOUT ATAXIA-TELANGIECTASIA

Ataxia-telangiectasia, or A-T, is a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer.

What is A-T?

A-T affects a large variety of systems in the body, causing symptoms that affect health and daily living.

How is A-T Inherited?

Find information on how this recessive genetic disease is inherited.

Diagnosing A-T

Clinic presentation, laboratory markers, and possible symptoms of A-T. Links to information in languages other than English.

A-T Family Database Registration

We would like to keep in touch with all A-T families so that we can help. From time to time, we reach out with important information about A-T or announcements about clinical studies and trials to help further research.

Caring for People with A-T

Find a 16-page handbook covering topics including neurology, managing lung health, immunology, vaccine schedules, cancer, and school recommendations. Since A-T is a rare disease, it can be difficult to find comprehensive information on how to best manage an A-T patient's health. The A-T Children's Project has been funding specialized clinical evaluations for A-T since 1995, and much of the information found here is a result of the hundreds of families who have been a part of this effort.

Quick Information Card

This card highlights important information about caring for someone with A-T for emergency room, urgent care, or other healthcare professionals. Please contact the A-T Children's Project if you would like copies sent to you.

Handbook for Families and Caregivers

The Handbook has more in-depth medical, scientific, therapeutic, and school-related information from experts.

A-T Clinical Center at Johns Hopkins Children's Center

The A-T Children's Project established and continues to fund this clinic through the grassroots efforts of families and friends.

A-T Cancer Consultations at St. Jude Children's Research Hospital

Oncologists at St. Jude have developed specialized protocols to treat people with A-T who get cancer.

Genetic Testing

Genetic tests are available to help make and/or confirm a diagnosis of A-T.

Meet People with A-T

Find video, photo gallery, books and poems featuring people with A-T.

International A-T Organizations

Organizations around the world are working to increase awareness, provide information to families, and work toward finding a cure.

Questions or comments from A-T families? Please contact our Family Support Coordinator, Rosa Fernandez.

 

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5300 W. Hillsboro Blvd., Suite 105
Coconut Creek, FL 33073 USA

800.5.HELP.A-T (800.543.5728)
954.481.6611

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