Staying Up To Date

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Searching for information by signs and symptoms

Searching for accurate and reliable information among many online sources can be a very difficult task, particularly in the absence of a diagnosis.

Working with your/your child’s managing health team may help to identify appropriate search terms which accurately reflect specific signs/symptoms. Keeping up to date through a combination of reliable, rare/undiagnosed disease organizations as well as social media platforms can be helpful.

Resources

Guides to help with the process of finding reliable health information.

Government site with options to search for published scientific and medical literature. For copies of full articles, you can contact a medical/university library, contact your local library for interlibrary loan, or order them online. Authors of publications can also be a way to connect to experts in specific signs/symptoms.

Create alerts for automatic notification of new publications from a variety of credible sources.

Searchable site for sharing health information e.g. signs and symptoms and genetic data e.g. candidate genes (a gene suspected to be disease-causing) and DNA sequence data. Create a personal profile that can be automatically matched and made available to other families, clinicians, and researchers.

Information and Advocacy Groups

Search by specific signs/symptoms for information and advocacy organizations. These groups often track the latest research, management, treatments, and personal experiences. Signing up for regular newsletters and attending conferences/webinars can be helpful in accessing information as well as connecting with researchers, health providers and other families.  

Search trustworthy rare/undiagnosed disease non-profit organizations such as:

Examples of information, advocacy and support organizations based on signs/symptoms

Child Neurology Foundation: education and support for children living with neurological conditions and their families.

Immune Deficiency Foundation: resources, education, advocacy and support for those with immunodeficiency as well as providing connections with clinicians and scientists.

The Childrens Heart Foundation: information, treatment, research and support for patients and families affected by congenital heart defects.

Epilepsy Society UK: research, advocacy and support to transform the lives of people with epilepsy.

Suggest a resource: send email to gcwg@udninternational.org​