Spata Foundation Inc

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Our mission is to advocate, educate, and raise funds for research towards SPATA5 & SPATA5L1 Disorders The SPATA Foundation's Mission is to advocate, educate, and drive research towards SPATA5 and SPATA5L1 Related Disorders. Our hope is that our efforts will help us better understand the function of the genes & lead to treatment for disorders related to these genes.

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Palm Coast

Address: 20 Llama Trl, Palm CoastWeb: Sign in to see organisation websiteFacebook: spatafoundationICO: 933768682

The SPATA Foundation ABOUT FOR FAMILIES RESEARCH GET INVOLVED SHOP CONTACT More we are THE SPATA FOUNDATION A Patient Organization for those affected by SPATA5AFG2A and SPATA5L1AFG2B Related Genetic Disorders roadmap to a cure about us We are a patient organization dedicated to serving families affected by SPATA5 and SPATA5L1 Related Disorders. These are rare genetic disorders characterized by epilepsy hearing loss and global developmental and intellectual delay. our mission The SPATA Foundation39s Mission is to advocate educate and drive research for SPATA5 and SPATA5L1 Related Disorders. Our hope is that our efforts will help us better understand the function of the genes lead to treatment for disorders related to these genes.

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Nicole

❤️ Thank you, Spata Foundation, for shining a light on these rare disorders. Together, we can create hope and change for families like Nicholas, Mariah, and Luca George! #SpataFoundation #HopeForCures

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Thomas

🌟 So inspired by your mission to advocate for those affected by SPATA5 and SPATA5L1 Disorders! Let's spread awareness and work together to make a difference! #RareDiseaseAwareness #GetInvolved

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Veronica

- How can families affected by SPATA5 and SPATA5L1 disorders engage with and support each other to improve their collective experience and raise awareness?

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Linda

- What strategies can patient organizations like the SPATA Foundation use to effectively advocate for increased research funding for rare genetic disorders like SPATA5 and SPATA5L1?

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Spata Foundation Inc

We’re often asked why the fundraising is left up to the families. Here’s some insight: In 2019, only 0. 1% of the NIH’s budget was allocated for Rare Disease Research.

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