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Family Leadership Hub


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…”

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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"

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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

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


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]