The US Department of Health and Human Services, National Institutes of Health has a continuing requirement for Research Support Services for the Genetic and Rare Diseases (GARD) Information Center and Its Inter-Related Initiatives.

Since 2003, the Office of Rare Diseases Research (ORDR,) jointly with the National Human Genome Research Institute (NHGRI), has funded the Genetic and Rare Diseases (GARD) information program. The program is meant to foster the generation and maintenance of information for and about research on rare diseases, and to stimulate vibrant partnerships with patient groups and other constituencies in the rare disease community.

Currently, there are about 7,000 known rare diseases that affect people in the United States, yet only a few hundred (less than five percent) have a treatment, and even fewer a cure. A disease is characterized as rare when it affects fewer than 200,000 people. While developing treatments for any complex, chronic, and severe disease is challenging, developing treatments for rare diseases presents additional difficulties and has many barriers in the translational development process aimed at treatments.

To this day, accurate, comprehensive, timely, and easy to understand information about a rare disease is difficult to find and is hardly ever available in any one place. It is for these reasons that NCATS supports the GARD information program. ORDR acts as a convener to bring together the rare diseases community to develop a tools collection such as the NCATS Toolkit for Patient-Focused Therapy Development (“Toolkit”) and the NCATS Rare Diseases Registry (RaDaR) Program. The Toolkit Project brings together, on the GARD website, information on the process of developing a high-quality research program and data collections; and helps shepherd more efficiently and successfully projects through the treatment development process.

• To continue the day-to-day management of GARD and its inter-related initiatives. This includes the NCATS Toolkit for Patient-Focused Therapy Development Project, the NCATS Rare Diseases Registry (RaDaR) Program, NIH-sponsored or co-sponsored scientific gatherings focusing on NCATS rare diseases initiatives, and other initiatives that will evolve as part of this requirement
• Task Area 1 – Program Management, Coordination, and Planning Support
• Task Area 2 – Contact Center Inquiry and Management Services
• Task Area 3 – Knowledge Management Services
• Task Area 4 – Events Management and Support Services
• Task Area 5 – Other Supporting Services
• Task Area 6 – Transition Planning. 10