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Individual Resources

Family Leadership


Resources for understanding and embracing your own capacity for leadership.

Learning that your child has (or may have) a genetic condition is a life changing experience. Perhaps you have never considered yourself a leader, or you feel you’re a leader in other areas of your life. You have the capacity to lead, support, and advocate for your family. It’s important to also remember to take care of yourself. These resources will help you learn and gain confidence to lead at the individual level.

BLOGS | If you have 10 minutes...

Finding the Win by Sarah Jacobs

“My husband, Adam, and I have two boys, Graham (10) and Dominic (6). Dominic has Dravet Syndrome. It is a rare and severe form of epilepsy that is lifelong and drug resistant…”

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VIDEOS | If you have 20 minutes...

Who is a Family Leader? With Jeannette Mejias

“Honor your process. It’s okay to not be okay. Then once you go through the stages, what’s next?”

Watch the video here

Different Paths: Journeys to Becoming a Family Leader in the Genetics System

An engaging recorded live session where family leaders shared what leadership means to them and how to foster it with others.

Watch the video here

Historias de líderes familiares

¿Quién es un líder familiar?

Watch the video here

LEARNING MODULES | If you have 1 hour...

Who is a Family Leader?

In this interactive virtual learning module, you will: Recognize who can be a family leader and how and where they demonstrate leadership, identify leadership characteristics and describe your own leadership in the context of being a family leader.

Complete the module here

¿Quién es un líder familiar?

En este módulo interactivo de aprendizaje virtual, podrá: Reconocer quién puede ser un líder familiar y cómo y dónde demuestran liderazgo, identificar características de liderazgo y describir su propio liderazgo en el contexto de ser un líder familiar.

Complete El Módulo Aquí

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


Understand and embrace your own capacity for leadership.


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


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]