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

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.

Agency - Department of Health and Human Services

The Department of Health and Human Services is the Federal government's principal agency for protecting the health of all Americans and providing essential human services, especially to those who are least able to help themselves.

Office - See Regional Agency Offices.

Program Accomplishments

Not Applicable.

Uses and Use Restrictions

Funds may be used to strengthen, expand, build upon or enhance research, surveillance, health promotion, education, and prevention/intervention activities that contribute to the mission and activities of the Division of Human Development and Disability.

Funds may be used to improve and strengthen State and local public health infrastructure by providing technical assistance to other appropriate health agencies, organizations, special groups or coalitions.

Funds may be used to support capacity building, program planning, development, implementation, evaluation, and surveillance for rare disorders and health outcomes, including related health promotion, education and training, and prevention/intervention.

Funds may also be used to coordinate the dissemination of prevention information to the general public, target populations, state and local agencies, and public and private sector organizations in the United States.

CDC will have substantial involvement with the award recipient during performance of the funded activity.

Funds may not be used for direct curative or rehabilitative services.

Seed Grants/Sub-Grants are not authorized under this program or included in Program authorizing legislature.

As a result, the recipient is not permitted to fund seed grants or sub-grants.

Recipient must issue proposed funding as a procurement requirement per the organization s established procedures.

Eligibility Requirements

Applicant Eligibility


Beneficiary Eligibility

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.


Applicants should review the individual CDC Funding Opportunity Announcement document issued under this program for any required proof or certification that must be submitted prior to, or simultaneous with, submission of an application package. OMB Circular No. A-87 applies to this program.

Aplication and Award Process

Preapplication Coordination

Yes All Funding Opportunity Announcements are published on www.grants.gov.

Applicants must complete the Grants.gov registration process.

Please see the following Grants.gov link for more information: http://www.grants.gov/applicants/get_registered.jsp.

Environmental impact information is not required for this program.

This program is excluded from coverage under E.O.


Application Procedures

OMB Circular No. A-102 applies to this program. OMB Circular No. A-110 applies to this program. Applicants must download the SF424 (R&R) application forms and SF424 (R&R) Application Guide for this requirement through Grants.gov/Apply.
Only the forms package directly attached to a specific Funding Opportunity Announcement (FOA) can be used. Applicants will not be able to use any other SF424 (R&R) forms (e.g., sample forms, forms from another FOA) although some of the "Attachment" files may be useable for more than one FOA.

If an applicant does not have access to the Internet, or if they have difficulty accessing the forms online, contact the CDC Procurement and Grants Office Technical Information Management Section (PGOTIMS) staff. For this, or further assistance, contact PGO TIMS: Telephone (770) 488-2700, Email: PGOTIM@cdc.gov.

HHS/CDC Telecommunications for the hearing impaired: TTY 770-488-2783.

The standard application forms must be used for this program, as furnished by CDC and required by 45 CFR 92 for State and local governmental agencies, and by 45 CFR 74 for nongovernmental applicants. This program is subject to the provisions of 45 CFR 92 for State and local governments and 45 CFR 74 for nonprofit organizations.

Award Procedures

Applications will be reviewed for completeness by the Procurement and Grants Office (PGO) staff, and for responsiveness by the National Center for Birth Defects and Developmental Disabilities(NCBDDD) and PGO. Incomplete applications and applications that are non-responsive to the eligibility criteria will not advance through the review process. Applicants will be notified the application did not meet submission requirements. Successful applicants will receive a Notice of Award (NOA) from the CDC Procurement and Grants Office. The NOA shall be the only binding, authorizing document between the recipient and CDC. The NOA will be signed by an authorized Grants Management Officer, and mailed to the recipient fiscal officer identified in the application. FOR RESEARCH GRANTS: Applications that are complete and responsive to the announcement will be evaluated for scientific and technical merit by an appropriate peer review group convened by NCBDDD in accordance with the review criteria stated below. All applications will: undergo a selection process in which only those applications deemed to have the highest scientific merit, generally the top half of applications under review, will be discussed and assigned a priority score; receive a written critique; receive a second level of review by the Board of Scientific Counselors. FOR NON-RESEARCH GRANTS/COOPERATIVE AGREEMENTS: Applicants are required to provide measures of effectiveness that will demonstrate the accomplishment of the various identified objectives of the grant or cooperative agreement. Measures of effectiveness must relate to the performance goals stated in the "Purpose" section of the announcement. Measures must be objective and quantitative and must measure the intended outcome. The measures of effectiveness must be submitted with the application and will be an element of evaluation. An objective review panel will evaluate complete and responsive applications according to the criteria listed. The objective review process will follow the policy requirements as stated in the GPD 2.04,


Contact the headquarters or regional office, as appropriate, for application deadlines.


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.

Range of Approval/Disapproval Time

From 90 to 120 days.


Not Applicable.


> 180 Days. Throughout the project periods, CDC s commitment to continuation of awards will be conditioned on the availability of funds, evidence of satisfactory progress by recipient (as documented in the required reports), and the determination that continued funding. If additional support is desired to continue a project beyond the approved project period, an application for competing continuation must be submitted for review in the same manner as a new application. Projects are renewable for periods of 1 to 4 years.

Assistance Considerations

Formula and Matching Requirements

Statutory formulas are not applicable to this program.
Matching requirements are not applicable to this program.
MOE requirements are not applicable to this program.

Length and Time Phasing of Assistance

Assistance is available for a 12-month budget period within project periods ranging from 1 to 5 years. Method of awarding/releasing assistance: lump sum.

Post Assistance Requirements


Assistance Award Closeout Requirements: Within 90 days after the last day of the final budget period the following final reports and other programmatic reports are required: 1) Final Progress Report to include a statement of progress made toward the achievement of originally stated aims, a description of results (positive or negative) considered significant, and a list of publications resulting from the project, with plans, if any, for further publication; 2) Federal Financial Report to include only those funds authorized and actually expended during the timeframe covered by the report; 3) Equipment Inventory Report, if no equipment is acquired under the award, a negative report is required; and 4) Final Invention Statement, if no inventions were conceived under this assistance award, a negative report is required.

The FFR- Federal Cash Transaction Report, form SF272 is due quarterly directly to the DHHS Payment Management System.

For more information on cash transaction reports, see the Division of Payment Management"s Web site http://www.dpm.psc.gov/.

Annual Performance Report: This report is due 120 days before the end of the budget period and serves as the continuation application each year.
The Annual Progress Report (APR) is due 90 days after the end of the budget period.

The APR must contain the Annual Performance Report and a Success Story.

Additional reporting requires for the APR will be noted in the Notice of Award (NOA).

The Annual Federal Final Report (FFR) is required and must be submitted through eRA commons 90 days after the end of each budget period.

The FFR should only include funds authorized and actually expended during the timeframe covered by the report.

If the FFR is not finalized by the due date, and interim FFR must be submitted and marked "NOT FINAL," and an amount of un-liquidated obligations should be annotated to reflect unpaid expenses.


The National Center on Birth Defects and Developmental Disabilities may propose on-site meetings, off-site or other processes for the exchange of information on progress toward objectives of collaborative activities.


In accordance with the provisions of OMB Circular No. A-133 (Revised, June 27, 2003), "Audits of States, Local Governments, and Non-Profit Organizations," nonfederal entities that expend financial assistance of $500,000 or more in Federal awards will have a single or a program-specific audit conducted for that year. Nonfederal entities that expend less than $500,000 a year in Federal awards are exempt from Federal audit requirements for that year, except as noted in Circular No. A-133.


There is a 3-year record retention requirement; records shall be retained beyond the 3-year period if final audit has not been done or findings resolved. Property records must be retained in accordance with the HHS Grants Policy Statement requirements.

Financial Information

Account Identification



(Cooperative Agreements) FY 12 $0; FY 13 est $0; and FY 14 est $1,750,000 - FY2015: $1,750,000.

Range and Average of Financial Assistance

FY 14 range is dependent upon funding availability. Award Amounts range from $5,000 to $1,750,000.

Regulations, Guidelines, and Literature

Regulations governing this program are published under 42 CFR Part 51b. Guidelines are available in the application kit. The HHS Grants Policy Statement can be found online at: http://www.hhs.gov/asrt/og/grantinformation/hhsgps107.pdf

Information Contacts

Regional or Local Office

See Regional Agency Offices.

Headquarters Office

Tiffany Neal 1600 Clifton Road, NE, MS-E88, Atlanta, Georgia 30341 Email: tmn0@cdc.gov Phone: 404-498-3042

Criteria for Selecting Proposals

Description: In general, applications are reviewed on the basis of scientific/technical merit, with attention given to such matters as: (1) The degree to which the applicant satisfies the essential requirements and possesses other desired characteristics, such as depth, breadth, and merit of the overall application relative to the types of projects proposed; (2) clarity of purpose and overall qualifications, adequacy and appropriateness of personnel to accomplish proposed prevention research projects and demonstration projects, and the nation"s health priorities and needs; (3) ability to generalize, translate and disseminate to State or local health departments, and other appropriate national regional, and local public health agencies and organizations; (4) reasonableness of the proposed budget in relation to the work proposed. Other criteria will be listed in the individual funding opportunity announcement.

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