Your Input Sought

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.

Research Survey for Caretakers of Women with Intellectual and Developmental Disabilities
A researcher at Brandeis University is conducting a study on sexual and reproductive health care for women with intellectual and developmental disabilities. She is seeking family caregivers of such women to complete an online survey. The goal of the survey is to understand the perspectives and experiences of family caregivers about sexual and reproductive health care for women with intellectual and developmental disabilities.

Of Possible Interest

The Hidden Social Factors Driving Disparities in Childhood Cancer Survival Rates
Blog of the USC Annenberg Center for Health Journalism (8/21/18)

An Oasis of Compassion
As reported in Penn Today, since 2015, the Hospital of the University of Pennsylvania has supported the Family Caregiver Center—one of only a few in the United States.

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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.

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