# Rare Disorders: Research, Surveillance, Health Promotion, and Education  (93.315)

Source: https://welltoldgrants.com/programs/93-315-rare-disorders-research-surveillance-health-promotion-and/  
Publisher: Well Told Grants. Data: USAspending.gov and Grants.gov, updated November 7, 2026.

Rare Disorders: Research, Surveillance, Health Promotion, and Education  is run by Department of Health and Human Services. From fiscal 2021 to 2025 it awarded $16.2 million in 38 grants, about $425,451 per award.

## Objectives

To (1) Promote public health capacity by conducting research to expand the knowledge base around people with complex disabling conditions, including muscular dystrophy, fragile X syndrome and spina bifida across the lifespan, with the goal of improving their health and quality of life; (2) apply lessons learned to design public health approaches for other childhood onset complex disabling conditions; (3) develop and disseminate information from surveillance and epidemiologic research, identifying intervention strategies for secondary conditions; (4) assess access to and costs associated with health care these conditions; (5) collaborate with partners in the public and private sector to support the development of standards of care and improve health care and related services for people with complex disabling conditions; (6) deliver technical assistance to public and private organizations, universities and local and state agencies on accessing factors affecting medical, functional, and psychosocial outcomes; (7) provide leadership in health education and promotion in people of all ages who have complex disabling conditions and their families; and (8) support partners in facilitating early identification of these diseases and adoption of effective interventions.

## Funding by fiscal year

| Year | Amount | Awards |
|---|---|---|
| 2021 | $5.3 million | 38 |
| 2022 | $5.3 million | 37 |
| 2023 | $5.6 million | 37 |
| 2024 | $0 | 0 |
| 2025 | $0 | 0 |

## Largest recipients

| Recipient | State | Amount |
|---|---|---|
| Research Triangle Institute | North Carolina | $2.3 million |
| Spina Bifida Association of America, Inc. | Virginia | $2.0 million |
| South Carolina Department of Public Health | South Carolina | $1.6 million |
| Health Research, Inc. | New York | $1.5 million |
| University of Utah | Utah | $1.5 million |
| The University of Iowa | Iowa | $1.4 million |
| University of Florida | Florida | $1.1 million |
| Virginia Commonwealth University | Virginia | $1.1 million |
| Children's Hospital Los Angeles | California | $315,000 |
| Vanderbilt University Medical Center | Tennessee | $315,000 |
| Duke University | North Carolina | $314,974 |
| Ann & Robert H Lurie Childrens Hospital of Chicago | Illinois | $313,952 |
| Children's Hospital of Wisconsin, Inc. | Wisconsin | $308,317 |
| University of Alabama at Birmingham | Alabama | $284,427 |
| Baylor College of Medicine | Texas | $279,916 |
| The University of Texas Southwestern Medical Center | Texas | $241,364 |
| The Children's Hospital Corporation | Massachusetts | $240,000 |
| Pennsylvania State University | Pennsylvania | $240,000 |
| Oregon Health & Science University | Oregon | $239,937 |
| University of Pittsburgh - of the Commonwealth System of Higher Education | Pennsylvania | $236,133 |