Rare Disorders: Research, Surveillance, Health Promotion, and Education

$33.5 Million committed in FY2018–FY2026

Agency: Centers for Disease Control and Prevention, Health and Human Services, Department of
Assistance: Cooperative Agreements
CFDA number: 93.315
What it does: 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.
Who benefits: State; Local; Public nonprofit institution/organization; Federally Recognized Indian Tribal Governments; Individuals/Families affected by rare disorder/conditions; Private nonprofit institution/organizations, minority populations including Spanish speaking populations.
Who applies: Not Applicable
Authorized by: Public Health Service Act Sections 301, 301(a), 311, and 317C (42 U.S.C. Sections 241, 241(a), 237b-4, 243, 247-4, and 247b-4, as amended.

Committed by fiscal year

* FY2026 is year-to-date — the fiscal year is still in progress, so its total is still filling in. The striped band and dashed line mark that provisional stretch.

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How to read these numbers

Committed through this program: Money committed under this assistance listing (its CFDA program), counted in the year each action happened.
How it's paid: Most programs pay out one way — a grant, or a direct payment to individuals; the flow bar only appears when a program genuinely mixes types.
Some recipients aren't itemized: For entitlement programs like Social Security and Medicare, the government reports one aggregate instead of naming tens of millions of people, so the recipient roster isn't part of the public record.
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The colored bars: Every bar on this page splits by how the money moves:
Direct payments

Source

USAspending.gov ↗

Rare Disorders: Research, Surveillance, Health Promotion, and Education

$33.5 Million committed in FY2018–FY2026

Agency: Centers for Disease Control and Prevention, Health and Human Services, Department of
Assistance: Cooperative Agreements
CFDA number: 93.315
What it does: 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.
Who benefits: State; Local; Public nonprofit institution/organization; Federally Recognized Indian Tribal Governments; Individuals/Families affected by rare disorder/conditions; Private nonprofit institution/organizations, minority populations including Spanish speaking populations.
Who applies: Not Applicable
Authorized by: Public Health Service Act Sections 301, 301(a), 311, and 317C (42 U.S.C. Sections 241, 241(a), 237b-4, 243, 247-4, and 247b-4, as amended.