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