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

Objective

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 Can Apply

• Unrestricted by Entity Type

Who Benefits

• U.S. Territories
• Minority group
• Small business
• Private nonprofit institution/organization
• Other private institution/organization
• Native American Organizations
• State
• Local
• Public nonprofit institution/organization
• Other public institution/organization
• Federally Recognized Indian Tribal Governments

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.

Assistance Types

• Cooperative Agreement

Program Contact

sgriswold@cdc.gov
4047182623