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

$55,740,042

Total Assistance, FY 2008 to Present
Agency: CENTERS FOR DISEASE CONTROL AND PREVENTION, HEALTH AND HUMAN SERVICES, DEPARTMENT OF
Assistance Type: COOPERATIVE AGREEMENTS
Popular Name: Rare Disorders and Health Outcomes
Assistance Listing Number
93.315

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.

 
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