Disease InfoSearch Inclusion Guidelines
Online database of advocacy organizations and resources for genetic conditions
Are you looking for Disease Infosearch (DIS), the largest online database of disease advocacy organizations? You can now find this resource at www.diseaseinfosearch.org! To improve the usability of DIS, we’ve moved it to its own website, improved the navigation, and increased the number of resources available at a single click through the site. The site continues to serve as a credible resource for families and healthcare providers hoping to learn more about conditions, the latest research, and available support resources. Through expanded functionality, it now can be used by the research community to identify disease advocacy organizations with biobanks, facilitate collaboration with other organizations doing similar work, and much more!
Finding Information and Support
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:
- support groups
- clinical descriptions
- insurance issues
- arts and literature
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 firsthand what it means to be faced with a diagnosis and the subsequent need for accurate information. As experts on their condition, advocacy groups are highly motivated to keep this information up-to-date and accessible and to share it with the community. To judge the quality of this information for yourself, use the Trust It or Trash It? tool.
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.
- Understanding Patterns of Inheritance
- Genetic diseases are often the result of gene changes passed on from parent to child. However, some children affected with genetic conditions are from families with no history of the condition.
- Talking About a Diagnosis
- When a child is diagnosed with a condition, it can sometimes be very overwhelming for the parents. Sharing the diagnosis with other family members and friends can be both stressful and a source of comfort.
- Looking to the Future
- One of the major milestones for all families is when a child begins to transition into adulthood. While this transition period requires planning for every family, it is especially important for families of children with health conditions. There are many resources available to help assist in this transition process. It may also be helpful to consider reaching out to an advocacy or support group, as families who have already experienced these transitions are often good sources of information.