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Community Resources

Family Leadership Hub


Resources for making connections and raising awareness.

Many families of children with a genetic disorder find support and resources through joining communities. These communities may include parent groups, condition-specific groups, or social media groups. Within each group is a way to contribute and lead. These resources will help you build relationships with groups and lead within your community.

BLOGS | If you have 10 minutes...

More Questions than Answers by Cindy Weber

“We found a gene mutation. It’s called Cowden’s Syndrome. We know it's not right, but we really don’t know what it means.” That statement was supposed to answer our questions and give us some idea of our future. Instead, it told us nothing but a name...”

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Finding your Community after a Diagnosis, by Lily Brown

“Five years ago, during my first week at a new job, I received a phone call from my daughter's genetic counselor. "Is this a good time to talk?" I knew that this phone call could bring an end to a three-year search.”

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VIDEOS | If you have 20 minutes...

Telling Your Story with Cindy Weber

“I can't overstate how much power is in knowledge. And then you can make better choices for your children, yourself, and your future.”

Watch the video here

Inclusion and Community Acceptance with Sinjita Bhattacharya

“There are always other people in the community who want to help and who want to be there for you.”

Watch the video here

LEARNING MODULES | If you have 1 hour...

Telling Your Story

In this interactive virtual learning module, you will: Recognize best practices for telling your family's story in an interesting and motivating way, identify SMART request techniques for asking for support and/or change, apply best practices and SMART requests techniques to telling your own story.

Complete the module here

Inclusion and Community Acceptance

After completing this module, you'll understand your own biases as they relate to working within communities; be able to identify (and educate others on using) inclusive langauge and creating access and opportunities that value people with genetic conditions as equal (not lesser than); and understand how to work within the broader community to encourage inclusion and acceptance.

Complete the module here


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]