Model for Meaningful Family Engagement

Family Voices is a partner to the Genetic Alliance’s National Genetics Education and Family Support Center. This tip sheet was created in response to the Regional Genetics Networks (RGN) request for information to support and ensure meaningful family engagement in genetic services. This information was adapted from the Family Voices Framework for Assessing Family Engagement in Systems Change.

Youth; Civil Rights and Advocacy

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about civil rights and advocacy.

Reviewed 2019.

Youth; Education

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about education.

Reviewed 2019.

Youth; Health

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about health.

Reviewed 2019.

Youth; Work

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about working.

Reviewed 2019. 

Youth; Dating and Relationships

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about dating and relationships.

Reviewed 2019.

Youth; Transportation and Getting Around

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about transportation and getting around.

Reviewed 2019. 

Youth; Disability History And Culture

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about disability history and culture.

Reviewed 2019.

Youth; Working With A Group

This collection of KASA (Kids As Self-Advocates) resources is created for youth, by youth, about working with groups.

Reviewed 2019.

Setting Up and Preparing for Hill Visits 2019 Webinar

Funding for Family-to-Family Health Information Centers (F2Fs) needs to be reauthorized this year, and it’s important to educate Members of Congress about the extraordinary work that F2Fs do to serve families.

On this webinar, Family Voices Policy Director Janis Guerney will go over the specifics of making an appointment with your Congressional offices, talk about preparation and topics to discuss, and answer any questions you have about the process.

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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.

In honor of