Rare should not mean forgotten.
Raising Rare is a registered non-profit advancing awareness and research for FBXO11-related syndrome - and helping families understand how to begin the journey from diagnosis to scientific action.
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Build Awareness
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Make FBXO11 easier for families, clinicians and researchers to find.
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Advance Research
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Support rigorous work toward understanding disease mechanisms and therapeutic possibilities.
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Connect Families
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Share credible starting points, questions and organizations - not false promises
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Show the path
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Explain the long, evidence-based journey from an idea to a possible therapy
WHY WE EXIST
"There is nothing you can do" cannot be the end of the conversation
A rare diagnosis can leave families with more questions than answers. We created Raising Rare after beginning this journey for our daughter, Rylee.
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Our goal is not to promise a cure. It is to create informed momentum: connect the right people, fund responsible research, share what we learn and help other families find a credible place to start.
FBXO11 AT A GLANCE
A newly recognized neurodevelopmental condition
FBXO11-related syndrome is associated with changes in the FBXO11 gene. Reported features vary from person to person and can include developmental and language delays, intellectual disability, low muscle tone, autism-related features and seizures. Information is still limited, which is why participation, data and research matter.
The gene
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FBXO11 has important cellular functions, and disease-associated variants may disrupt how the protein works
The people
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Every person with FBXO11-related syndrome is unique. While individuals may share certain characteristics, their abilities, needs and experiences can vary significantly.
The opportunity
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Registries, natural-history information and laboratory models can help researchers ask better questions.
RESEARCH JOURNEY
Hope is strongest when it is transparent.
Understand
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Build disease models and study how specific FBXO11 variants affect cells.
Validate
Confirm the biological mechanism and identify measurable research endpoints.
Explore
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Evaluate potential therapeutic approaches with qualified research partners
Therapy development is not a straight line. Progress should be described by completed work, evidence, next decisions and remaining uncertainty.
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Translate
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If evidence supports it, progress through preclinical, regulatory and clinical pathways
Fund research, connect expertise, share credible information or bring another family into the community.