Join the Movement: Genetic TESTING Action Testing Day—July 25, 2025

Join us for the inaugural Genetic Testing Action Day on July 25!

In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in helping to accelerate answers for children with developmental delays and unexplained health concerns. Our goal is to empower families to talk with their child’s pediatrician about genetic testing options.

Every child deserves the best possible chance of a healthy future. For many families, that future starts with answers—and those answers often begin with genetic testing. That’s why we’re inviting you to be part of Genetic Testing Action Day on July 25, 2025.

Advancements in science and medicine are unlocking new treatments—and in some cases, cures—for genetic conditions. But too often, families face years of uncertainty before receiving an accurate genetic diagnosis.

We believe it doesn’t have to be this way.

Many developmental disorders and medical conditions with childhood onset have a genetic cause. Yet too many families are unaware that genetic testing is an option or how to access it. Start Genetic offers a free downloadable Parent Toolkit to equip parents with the tools, knowledge, and confidence to start a conversation with their pediatrician.

Genetic testing should be considered for children exhibiting signs of genetic conditions such as developmental delays, structural birth defects, or movement disorders. It can also be helpful for children with chronic functional problems, such as vision or hearing impairments, seizures, or behavioral issues. Additionally, genetic testing might be recommended for children with a family history of genetic diseases or those with complex medical conditions like cancer, although it’s important to know that not all genetic conditions are passed through family genes.

Even if your child had prior genetic testing, the science of genetics is quickly advancing, and newer tests may identify genetic changes that older tests couldn’t.

Whether you’re a parent, grandparent, caregiver, or advocate, you can help raise awareness of the importance of genetic testing. Has your family benefited from:

• Receiving family support, or connecting with a disease community or patient advocacy group?

• Connecting with genetic disease experts?

• Receiving care guidelines or other information about the genetic condition?

• Participating in research or a clinical trial?

If so, please help spread the word on social media!

• Use the hashtag #StartGenetic to join the movement online.

• Share StartGenetic.org to raise awareness about the importance of genetic testing and encourage parents to access the Parent Toolkit.

• Access the Digital Media Toolkit (for families with genetic diagnoses for the full list of #StartGenetic social media channels and ideas for prepared and original content that you can use to share how your family has benefitted from genetic testing.

This July let’s come together to support early diagnoses, better care, and brighter futures for all children. Let’s Start Genetic.