Skip to main content

Systems

System Resources

Family Leadership

Home
Family
Community
Systems

Make systemic, structural change through working in groups, advocacy, medical research, and more.

As you continue on your journey you may want to contribute to making lasting, systemic change for people with genetic conditions and/or your child’s specific condition. These resources will help you understand how you can make systemic change.

BLOGS | If you have 10 minutes...

Creating Systemic Change Through Communities by Pamela Aasen

“Both of my children have the recessive genetic condition Usher syndrome. At first, having 2 children with a genetic disorder that involves multiple sensory losses did not allow for much time to think about anything else…”

Read more

My Leadership Journey by Dana Yarbrough

"Something that has stuck with me from the first leadership training was sending notes of appreciation to leadership training presenters"

Read more

VIDEOS | If you have 20 minutes...

Creating Change Through Communities with Pamela Aasen

“The most important voice in all of this - the people who are making decisions for your children - are the parents, because it's our lived experience.”

Watch the video here

Working Together for Solutions with Dana Yarbrough

"Always come in to working with others by sharing some piece of who you are; that opens the door to humility and compassion."

Watch the video here

LEARNING MODULES | If you have 1 hour...

Creating Change Through Communities

In this interactive virtual learning module, you will: Review types of organizations that a parent leader might join - and how to find them, recognize the skills and talents that you bring to groups and how these skills can be utilized and identify best practices for serving on groups.

Complete the module here

Creación de cambio por medio de las comunidades

En este módulo interactivo de aprendizaje virtual, podrá: Revisar los tipos de organizaciones a las que un padre líder podría unirse, y cómo encontrarlos, reconocer las habilidades y talentos que aporta a los grupos y cómo se pueden utilizar estas habilidades e identificar las mejores prácticas para servir en grupos.

omplete El Módulo Aquí


Choose your area of interest below to see the resources for each section: Individual, Family, Community, and Sistémico.

Individual

Understand and embrace your own capacity for leadership.

Family

Navigate the journey to a diagnosis and leading within your family.


About

The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

Contact info

4301 Connecticut Ave NW Suite 404 Washington, DC 20008-2369

[email protected]