RAIDEN SCIENCE FOUNDATION
Creating more than hope —
giving kids suffering from UBA5 Disorder a fighting chance.
We are overcoming traditional research barriers to advance treatment for UBA5 Disorder, a debilitating and ultra-rare genetic disease.
In doing so, we are pushing forward medical breakthroughs, such as gene therapy, to help children all around the world who are suffering from UBA5 Disorder and, ultimately, other rare diseases.
WHAT IS UBA5?
UBA5 Disorder is a severe neurodevelopmental condition
UBA5 itself is a gene that encodes instructions critical for cellular breakdown and function. Mutations in the UBA5 gene result in protein malfunction, posing life-threatening risks and a reduction in quality of life as early as infancy.
An ultra-rare genetic disease
With only about 50 diagnosed children worldwide, UBA5 Disorder is considered an ultra-rare condition, leading to limited research within the field of medicine. Nevertheless, we are changing that.
THE SYMPTOMS
Motor Control Issues
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Hypotonia (body floppiness)
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Spasticity (body stiffness)
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Dystonia (involuntary muscle movement)
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Ataxia (no body coordination)
Cognitive Complications
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Seizures (epilepsy)
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Global developmental delay
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Intellectual disability
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Other brain abnormalities
Other Medical Challenges
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Microcephaly (poor head growth)
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Gastrointestinal (fed via a tube)
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Severe reflux
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Respiratory
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Vision impairment
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Requires 24/7 care
Every UBA5 child is unique, and the symptoms manifest differently over time
UBA5 hits close to home for us
Watch our hopeful story and learn about what inspires us to create a better tomorrow
RARE IS NOT SO RARE
200M
Children are affected by rare disease worldwide
60M
children affected by a rare disease will not live past 5 years old
95%
of rare diseases have no approved treatments
80%
of rare diseases are caused by genetics defects
The research we are accelerating today will have a scalable impact across other rare diseases tomorrow
So what can you do to help?
Latest Updates
Run4Raiden 2025
We raised $27,000 as part of the annual Run4Raiden 5K. On March 22nd, several UBA5 families participated simultaneously, creating a powerful moment of awareness.
Join our Fight4Rare community and support the fight against rare diseases.
We're grateful for all
the support on our journey.
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