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.
“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…”
“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.”
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.
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
