Your Input Sought

NEW: Seeking Parent Input on What Doctors Should Know in Caring for Children
The Council on Medical Student Education in Pediatrics is revising its General Pediatric Clerkship Curriculum. The foundation includes “The skills, attitudes, and knowledge that every doctor must know and do to safely and compassionately care for children.” The Council is asking for YOUR INPUT AS A PARENT WHO HAS INTERACTED WITH PHYSICIANS CARING FOR CHILDREN on what you feel are the crucial components ANY PHYSICIAN  needs to know  to care for children. It will take approximately 5 minutes to complete the survey, COMSEP – Family input on Curriculum.

Survey on Attending Genetics Appointments after Referrals
Open until Oct. 12
The NYMAC (New York-Mid-Atlantic Regional Genetics Network) — one of seven regional networks in the country funded by the Health Resources and Services Administration – is partnering with Family-to-Family Health Information Centers on a project to help understand why or why not people schedule and attend genetics appointments after a referral. The survey is open to any person or parent/guardian of a child who has ever been referred to a genetics professional, whether or not they scheduled or attended an appointment. Survey results will be used to create strategies to increase attendance to genetics appointments. The survey is completely voluntary and will take about 10-20 minutes to complete. It is available in English and Spanish and is not limited to those living in the mid-Atlantic region. The survey can be taken online until October 12 here.

CMS Tribal LTSS Program Survey
This survey is being conducted by the Centers for Medicare and Medicaid Services (CMS) to help them develop a list of tribally operated long-term services and supports (LTSS) programs across Indian Country. The results will enable the sharing of LTSS best practices across Indian Country. Tribes and tribal organizations may provide these services directly, or through a contract or agreement with an outside organization.


Pediatricians Partnering with Parents to Promote Social and Emotional Development of Children, Birth to Age 3 
The National Institute for Children’s Health Quality (NICHQ) is seeking applications from primary care family and pediatric practices who provide well-child visits to children, birth to age 3 who are interested in joining the Pediatrics Supporting Parents Learning Community. Participating practices will test and implement tools and changes aimed at supporting families as they support the social and emotional development of their children. Practices will collaborate with colleagues across the country during a 17-month learning community launching January 2019. All participating practices will receive a stipend to support their involvement. Learn more on the Pediatrics Supporting Parents website. If you have any questions, please connect with the NICHQ team at

Of Possible Interest

Behind the Scenes: Working to Pass Federal Maternal Mortality Legislation (From AMCHP’s Pulse (9/13/18)This is a great description of parts of the legislative process.

Children Lose Out on Liver Transplants, Study Finds (NBC News, 9/17/18)

Breaking New Ground: Supporting Employed Family Caregivers with Workplace Leave
(AARP Public Policy Institute, 9/4/18)

When ICE Comes Knocking, Healthcare Workers Want to Be Prepared
(Healthcare Dive 9/15/18)

Shifting Non-Emergency Medical Transportation to Lyft Improves Patient Experience and Lowers Costs (Health Affairs blog, 9/14/18)

Childhood Trauma and Its Lifelong Health Effects More Prevalent Among Minorities (National Public Radio, 9/17/18)

Complete your gift to help keep families at the center of children’s health care

I'm ready
Not today

Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of