Spata Foundation Inc
The SPATA Foundation
933768682
Palm Coast, FL 32164 USA
spatafoundation.org
spatafoundation
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Více Výzkum vrozených vad a genetických onemocnění
Novinky
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. There are 7,000 known rare diseases. Government funding for Rare Diseases is miniscule compared to the cost associated with this type of research. On top of that, many entities do not want to fund projects that will *only* impact tiny patient groups, despite the fact that our children are part of these groups. There’s no financial incentive. There’s already very minimal funding for rare diseases, which most already goes to specific research consortiums. Now, funding is being cut leaving even less for our rare families. (fb)
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Poslední komentáře
❤️ 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 #HopeForCuresdetail |
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🌟 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 #GetInvolveddetail |
Poslední diskuze
- 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?Odpovědí: 3, Naposledy před 1 den detail |
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- How can families affected by SPATA5 and SPATA5L1 disorders engage with and support each other to improve their collective experience and raise awareness?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
Palm Coast
O společnosti
- H20 -
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.
Výzkum vrozených vad a genetických onemocnění
