Genetic Alliance – Disease InfoSearch

Genetic Alliance Disease InfoSearch
Online database of advocacy organizations and resources for genetic conditions

Disease InfoSearch, an online search tool and database, is a compilation of information on genetic conditions provided and vetted by disease-specific advocacy organizations. Disease InfoSearch provides up-to-date information and quality links on:

Quality information about genetic conditions should be readily available to individuals and families affected by genetic conditions. Condition-specific advocacy organizations are the premier providers of this information. These organizations provide the tools needed to cope day to day, find solutions, obtain services, and heal. They know first-hand what it means to be faced with a diagnosis and the subsequent need for accurate information. As experts in their condition, advocacy groups are highly motivated to keep this information up-to-date and accessible and to share it with the community.

Disease InfoSearch also includes a portal designed to help locate and navigate the vast array of information on genetic disorders that is available from the National Library of Medicine (NLM), a part of the National Institutes of Health (NIH). The “portal” into NLM resources brings together, on one webpage, links to a wide range of information for patients and caregivers – from basic descriptions of a disease and its symptoms to the most current scientific research. It is designed to serve the needs of a broad spectrum of users, ranging from those who are just beginning to learn about a disorder to those who understand complex scientific information, including those who want to track emerging information over time. This valuable new resource was developed in collaboration with the National Center for Biotechnology Information (NCBI), a division of NLM that creates and maintains public databases of biomedical information.