How can GARD help Researchers?
Information about many rare diseases is lacking, which creates unique challenges for researchers wishing to study these conditions. The challenges span the life cycle of the research process―from funding, to study design, to patient recruitment, to patient retention.
The National Center for Advancing Translational Sciences (NCATS) is developing new approaches, technologies, resources, and models to address these challenges; to demonstrate their usefulness; and to disseminate the resulting data, analyses, and methodologies to the broad scientific community. Learn more about NCATS.
GARD can help you find fundamental information and resources to help with your study protocols. You can find disease-specific information including signs and symptoms, incidence and prevalence, general information in plain language, and more by searching the GARD website. You can use the search box above or go to the Diseases tab for additional ways to search for information on more than 6,500 rare and/or genetic diseases.
On each disease page, you will find links to resources and information written by GARD Information Specialists in response to questions they've received. The amount of information varies depending on how many questions GARD has received about each condition. If you can’t find information on the website that you need, contact a GARD Information Specialist. GARD Information Specialists have advanced degrees in genetics and have experience working with people who have rare and/or genetic conditions.
GARD Information Specialists can also provide the following:
Custom literature searches.
Information about NIH programs that support rare disease research.
GARD's rare disease list.
Contact information for advocacy organizations that may collaborate with you in your research and assist with recruitment efforts.
On the GARD website you can also find guides with tips on general topics, important resources, and answers to researchers' commonly asked questions. We appreciate feedback about these guides and resources and encourage you to make a suggestion.