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Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
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About the Committee

Charter (PDF - 766 KB)

Membership (PDF - 371 KB)

Authorizing Legislation

Public Health Service Act 42 U.S.C. 217a (PDF - 52 KB)

Organizational Representatives

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) may invite up to 15 organizations to serve as Organizational Representatives. These organizations should have wide-ranging newborn screening and heritable disorders interests. In addition, their work should inform the activities of the ACHDNC.

Eligible organizations must represent national public health constituencies, medical professional societies, or consumer/family advocacy organizations with large, broad constituencies. Only organizations with broad interest or involvement in newborn screening are eligible and only if it is deemed that representation is necessary to effectively carry out the functions of the ACHDNC.

Organizational Representatives participate in ACHDNC meetings to provide relevant expertise and perspectives to committee members during their deliberations and discussions. Organizational Representatives do not vote and are not considered official members of the ACHDNC.

Eligible Organizations

Organizations eligible to be Organizational Representatives include:

  • Public health constituencies (state and local)
    • Hospitals and medical home
    • Professional societies with an emphasis on public health
    • Organizations that support state and local public health programs
  • Primary Care
    • Professional societies (clinical and scientific)
  • Specialty/Subspecialty
    • Professional societies (clinical and scientific)
  • Other federal agencies
  • Consumer/family organizations, advocacy groups with a broad focus and constituencies

Organizations which represent more narrow interests such as interest in a single disease or treatment, or small constituencies, are not eligible to be appointed as ACHDNC Organizational Representatives.

Terms of Service

An organization is eligible to serve as long as the organization's area of expertise and mission are relevant to the Committee's purpose, objective, scope of activities, and duties, and as long as the organization actively participates on Committee activities. Organizations are expected to cover the cost of travel for their designated representative to all in-person ACHDNC meetings.

Every three years, the Chair and Designated Federal Official will re-assess the organizations' subject area of expertise, mission, relevancy, and benefit provided as they relate to the ACHDNC's purpose, objective, scope of activities, and duties.

Every three years organizations will be asked to reaffirm their commitment to being an ACHDNC Organizational Representative.

Currently, there are three openings. 

Application Process

Interested Organizations are requested to submit a written application to the ACHDNC Designated Federal Official, Debi Sarkar, MPH, at Applications must contain the following:

Cover Letter

  • organization name and mission statement
  • contact information for the designated representative, including the point of contact name, address, email, telephone number, and the organization's website
  • short description of how the organizational perspective and expertise would serve to increase the knowledge base of the ACHDNC
  • short description of how the work of the ACHDNC impacts the organization and its stakeholders


  • perspective and expertise provided by the organization and how/why this perspective and expertise is relevant to/would benefit the ACHDNC
  • description of how the ACHDNC's work affects and/or impacts the organization and its constituency
  • list of organizational projects, programs, and products that are of relevance to the ACHDNC's work
  • an affirmation that the organizations wishes to serve as a representative to the ACHDNC
  • an affirmation of the organization's commitment to provide expert input into the decision-making process of the ACHDNC
  • an affirmation of the organization's commitment to financially support a representative to attend all ACHDNC meetings
  • an affirmation of the organization's commitment to ensure active contribution to, and dissemination of, ACHDNC activities and recommendations to its representative constituencies
  • information about any possible conflicts of interest
    • an affirmation that the organization has no conflict of interest that would preclude informing the ACHDNC in a fair and balanced manner, or
    • detailed information concerning any possible conflicts of interest relative to both the organization and the proposed Organizational Representative such as current or anticipated employment, consultancies, research grants, or contracts

Selection of Organizational Representatives

The selection of Organizational Representatives is based on a review of the organization's subject area of expertise, mission, relevancy, and benefit provided relative to the ACHDNC's purpose. Read the ACHDNC Charter, Legislation, and a list of the current voting membership. Final selection of Organizational Representatives will be made by the Committee Chair and Designated Federal Official.


Catharine Riley, PhD, MPH
Designated Federal Official
Genetic Services Branch
Maternal and Child Health Bureau
Health Resources and Services Administration