Join us on July 25 for Genetic Testing Action Day
Created by parents, for parents, our mission is to empower you to access genetic testing for yourself or your child—unlocking understanding and helping guide care from the start.
Accelerate answers
Start with genetic testing.
If your child has developmental delays or other concerning symptoms, genetic testing can often identify the cause—leading to earlier treatment and better management to improve short- and long-term outcomes. With genetic insights, you and your doctors can make more informed decisions to help your child live their best life.
WHY GENETIC TESTING
Your genes: a powerful tool for health
Think of your body as having a unique instruction book—your genes. Genetic testing is like a spell-check for these instructions, looking for any changes or “variants” that might be misspelled or missing.
Sometimes, these variants are passed down from your parents. But many times they are happening for the very first time in a child—meaning that there is no family history of the genetic change.
Genetic testing may help find these changes in your or your child’s genes. Variants can be linked to certain health conditions like autism or epilepsy.
A genetic test uses a sample of your blood or saliva sent to a specialized lab. There, scientists “read” your DNA’s instructions and send a report to your doctor, who can explain what the results mean for you.
“Getting a genetic diagnosis for our daughter brought so much peace. It lifted the weight of guilt and gave us a sense of direction—plus, we found a community that truly understands.”
Haley (left) & Lori (right). Haley is living with Phelan-McDermid syndrome (PMS).
WHO IT CAN HELP
Everyone with a genetic disease deserves to know
Whether your child has unexplained delays or you are experiencing unexplained symptoms—everyone deserves the best answers possible. Genetic testing can accelerate the process and is often accessible, either through insurance or other programs.
GET STARTED
It starts July 25—Genetic Testing Action Day
Talk to your doctor
Have concerns about your child’s development or other medical issues in your family? Tell your doctor you want to discuss genetic testing. Empowered by this Parent Toolkit, explore with your doctor how genetic testing might benefit your child or you.
Spread the word
Know others who might benefit from learning about genetic testing? Share this website and follow/share our social channels to inform others who could benefit from discussing genetic testing with their doctor.
Share your story
Already know about genetic testing from personal experience? Share how your family has benefited from genetic testing on your social channels using our digital media toolkit.
Resources
Find community and support
Connecting with others can be a powerful way to find information—from research studies to financial assistance that may be available for genetic testing. Explore the resources below to find the support and community you need.
Patient advocacy groups
There’s a wide range of patient advocacy organizations for genetic conditions. Your doctor or a genetic counselor can also provide recommendations for support groups for a specific disease.
Learn about genetic testing for kids at the Genetic Support Foundation.
Downloadable resources
Cost of genetic testing
Many insurance plans, including Medicaid, now pay for the genetic tests you might need. If your insurance company says no at first, asking them again (called an appeal), or asking the doctor to call them (called a peer-to-peer appeal) may work.
If your insurance denies coverage, or if you are required to pay a large amount yourself (a high co-pay), there may be other options available that you can discuss with your doctor, such as research studies, sponsored testing, or financial assistance. Some of these studies give you a report that you can share with your doctor to help make decisions about your or your child’s care.
Expert organizations
Expert groups provide guidelines and recommendations around genetic testing, helping you know when testing might be helpful for your patients.
Downloadable resources
“Our son’s diagnosis has provided us key insights into what to expect as he grows up and how to improve his quality of life by monitoring for health risks that are increased because of his condition.”
Paxton (left) & Bryan (right). Paxton is living with Tatton-Brown-Rahman syndrome (TBRS).
About Start Genetic
Empowering knowledge, driving action
Start Genetic is a movement dedicated to increasing awareness and understanding of genetic testing and genetic conditions. Our mission is to empower people and healthcare providers to think genetic first for the answers they need to move forward.
Start Genetic is an initiative of CureSHANK, a nonprofit research advocacy organization focused on Phelan-McDermid syndrome. The initiative was created to accelerate diagnosis, treatment, and better health outcomes for everyone affected by genetic disorders.
Our sponsors
Thank you to our sponsors for their generous support in making Start Genetic a reality. Become a sponsor.
