National Organization for Rare Disorders

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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Understanding Genetics: A Guide for Patients and Health Professionals

Understanding genetics begins with a basic introduction to genetics concepts, followed by detailed information on topics such as diagnosis of genetic conditions, family history, newborn screening, genetic counseling, understanding patient stories, and ethical, legal, and social issues in genetics.

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Making Sense of Your Genes: A Guide to Genetic Counseling

This publication provides a public-friendly introduction to genetic counseling and its applications. A truly collaborative process, this publication is borne out of partnership between Genetic Alliance, the National Society of Genetic Counselors, students at the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program, and a number of independent advisors and reviewers. The guide includes general information about genetic counseling, tips on how to prepare for an appointment, and details about different specialties in the field.

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Talking Glossary of Genetic Terms

The Talking Glossary features more than 250 common genetic terms pronounced and explained in an easy-to-understand way by leading scientists and professionals at the National Human Genome Research Institute. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.

Visit the National Human Gene Research Institute via NIH

Undiagnosed Disease Network

The Common Fund's Undiagnosed Diseases Network (UDN) is a research study to improve the level of diagnosis of rare and undiagnosed conditions. In the United States, it has been estimated that approximately 25 million Americans suffer from a rare disorder. The UDN established a nationwide network of clinicians and researchers who use both basic and clinical research to uncover the underlying disease mechanisms associated with these conditions. In its first 20 months, the UDN accepted 601 participants undiagnosed by traditional medical practices. Of those who completed their UDN evaluation during this time, 35% were given a diagnosis. Many of these diagnoses were rare genetic diseases including 31 previously unknown syndromes.

Visit the Common Fund website via NIH

Genetics Education Materials for School Success (GEMSS)

The Genetics Education Materials for School Success (GEMSS) aims to assure that all children with genetic health conditions succeed in school-life. Their Web site offers general and condition-specific education resources to help teachers and parents better understand the needs of students who have genetic conditions.

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Helping Your Child Cope During and After Serious Illness, Injury or Hospitalization

Traumatic stress symptoms are common after a serious illness, injury, or hospitalization. Even though it is your child who is ill or injured, your whole family can be affected. It's normal for you, as a parent, to feel overwhelmed or unprepared to help your child (or yourself) cope.

Learn more from NCTSN