Global awareness campaign highlights the importance of genetic diagnosis in an era of rapidly advancing genetic medicine

LOS ANGELES, June 24, 2026 /PRNewswire/ -- As advances in genetic medicine create new opportunities for patients with rare diseases, congenital anomalies, developmental disabilities, epilepsy, inherited cancers, and other conditions, Start Genetic today announced the second annual Genetic Testing Action Day, to be held on July 25, 2026.

The campaign seeks to raise awareness about the role of genetic testing in helping individuals and families obtain answers, inform medical care, connect with support resources, and participate in research.

Despite significant advances in genetic testing technology, many patients who could benefit from testing never receive it. A recent analysis of Medicaid claims found that only 16.9% of children with autism received genetic testing, despite longstanding recommendations supporting genetic evaluation in children with autism.

"Genetic testing has the potential to shorten diagnostic odysseys that can last for years," said Jenny Graham Beeson, co-founder of Start Genetic and board member of CureSHANK. "Families deserve access to information that can help explain a medical condition and help identify medicines that are tailored to the underlying genetic cause of the condition."

For Beeson, the issue is personal. She has two children affected by different genetic disorders impacting development. "When my daughter was younger, finding answers was difficult," said Beeson. "Today, genetic testing can provide answers for many families much earlier in their journey. We want more people to know that these tools exist and understand how they may be able to access them."

Observed annually on July 25 in honor of Rosalind Franklin, whose work contributed to the discovery of DNA's structure, Genetic Testing Action Day encourages individuals, families, healthcare professionals, researchers, and advocacy organizations to promote awareness of genetic testing and its potential benefits.

On July 25, participants are encouraged to:

• Talk with a healthcare provider about whether genetic testing may be appropriate
• Share their experiences with genetic testing on social media
• Download and distribute educational resources from StartGenetic.org
• Help raise awareness about the value of genetic diagnosis

A Growing Movement

Since its launch in 2025, Genetic Testing Action Day has grown into an international awareness initiative supported by patient advocacy organizations, healthcare providers, researchers, and industry partners.

This year's campaign is supported by our lead sponsor Illumina, and supporting sponsors PYC Therapeutics, Neuren Pharmaceuticals, GRIN Therapeutics, Jaguar Gene Therapy, MyOme, anonymous donors, and a growing coalition of organizations committed to improving awareness and access to genetic testing.

About Start Genetic

Founded in 2025, Start Genetic is a public awareness initiative dedicated to increasing awareness and uptake of genetic testing. Start Genetic is an initiative of CureSHANK, a nonprofit advancing therapies for Phelan-McDermid syndrome.

Social media toolkits will be available for download starting June 23, 2026. Sign up for our email list to receive updates, resources, and Genetic Testing Action Day materials directly to your inbox.

Start Genetic Media Contact
Geraldine Bliss
Co-Founder of Start Genetic
geraldine@cureshank.org
StartGenetic.org
@StartGenetic

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SOURCE Start Genetic