National Committees 

Purpose:

Program Committees (PCs) are designed to support the work of specific program areas of Conquering CHD. These
areas include:

Membership:

• Each committee will include members of the scientific and patient/family communities.
• New members will be appointed by the Committee Chair through a nomination process with
  consideration given to size of the Committee (12-20 members) and diversity of expertise, geography,
  gender and race/ethnicity.
• Committee nomination is open to all interested stakeholders – ex: young career investigators and
  patients/families new to Conquering CHD are encouraged to participate.
• Terms of service are 2 years at which time you will be given the opportunity to re-evaluate your
  participation. There are no limits on the number of consecutive terms.

While PC Committees are standing committees, the frequency of meeting will be determined by the Committee Chair and Staff Leadership, likely not more than 6x year.

Leadership:

• Each Program Committee is managed by a staff member of Conquering CHD.
• The PCs will be led by 1 or 2 chairpersons from either the patient/parent or scientific community. Each will serve a
  two-year term and have the opportunity to continue in the role indefinitely at the discretion of the chair(s) and
  staff member.

Responsibilities include helping in identification and recruitment of committee members, inform PC
meeting agendas, facilitate accountability of committee members, assist in addressing urgent program needs.

Committee Descriptions

Advocacy Committee

• Promote federal and state policies to improve quality and outcomes for patients and families
  with congenital heart disease.
• Craft Conquering CHD’s public policy priorities, support the annual Advocacy Conference and Hill
  Day in Washington D.C., identify and participate in grass roots advocacy activities throughout the
  year.

Transition/Lifelong Care

• Improve access and adherence to recommended follow-up care across the lifespan.
• Advocate for implementation of best practice standards for transition and transfer of care,
  develop a mentorship program to ease transition process for patients and families.

Education

• Develop clinically sound and vetted educational resources for patients and families based on the
  needs of the patient and scientific communities.
• Ensure that our resources are up-to-date meeting current standards and guidelines, revising as
  appropriate.
  Promote the utilization of our educational resources by hospital and other community
  stakeholders.

Fundraising/Community

• Develop resources for 3rd party fundraisers
• Communicate with and monitor status of fundraisers benefiting Conquering CHD across the
  country
• Manage Community Events across the country.

Bereavement

• Develop resources for our bereaved community
• Support bereaved families