Amplifying Awareness for
SPATA Related Genetic Disorders
SPATA5 and SPATA5L1 Related Genetic Disorders are very rare genetic conditions. Kids with these conditions often have developmental delays, hearing loss, seizures, and movement disorders. However, each child is different.​
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SPATA5 and SPATA5L1 are the name of the genes. They are separate genes, but are closely related and function together in the body. Both disorders result in the same set of symptoms and characteristics.
Making Progress
For Everyone Affected
The SPATA Foundation is here not only to support families living with SPATA5 and SPATA5L1 disorders, but to actively lead the way toward real treatments and better lives for those affected.
We’re building a future that didn’t exist before—connecting families, partnering with top researchers, driving innovative science, and pushing for the breakthroughs our children deserve. Every step we take is focused on transforming diagnosis into action and uncertainty into hope.
Through advocacy, collaboration, and a relentless commitment to progress, the SPATA Foundation is charting the path forward.
WORLDWIDE SPATA MAP:
COMING SOON
Join our Family Network
A Place for SPATA Families to Connect
Have a child that was diagnosed with SPATA5 or SPATA5L1 Disorder?
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You are not alone.
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Join our global community of families who understand exactly what you're going through. Together, we can connect, share experiences, and support one another through every stage of this journey.
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By joining our network, you'll also help strengthen awareness and research efforts - bringing us closer to better answers, better care, and a brighter future for all SPATA families.
Help us Make a Difference
Rare diseases are often overlooked when it comes to research and funding due to the small populations they serve. This means advocating for research and funding this research falls to the duty of the rare disease families and organizations.
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We can't find a cure without your help. We will need MILLIONS of dollars, your VOICE, and your PARTICIPATION in research.
Help us find a cure
Donate Today
The SPATA Foundation is on a mission to fund important research that will lead to viable treatment options for those affected.​
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The reality is that funding is left up to us as families. Your financial support helps us get one step closer to a better lives for those with SPATA5 and SPATA5L1 Disorders.