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About the Founder
Genesis Jones is a resilient advocate, cell transplant, and dedicated supporter of the rare disease. Drawing upon her personal of pain, recovery, and transformation, Genesis established the Rare Resilience Alliance (RRA) to empower individuals facing sick cell, transplant recovery, and life beyond.
With expertise in child development and clinical mental health counseling, she combines her professional knowledge to drive the field forward. Through RRA, Genesis is devoted to elevating patient voices, developing culturally relevant resources, and fostering a community where resilience is the foundation
RRA’s origin & why it exists
Rare Resilience Alliance was born from the lived experience of its founder, Genesis Jones—a Sickle Cell Warrior and post-transplant survivor who knows firsthand the isolation, uncertainty, and strength required to navigate life with a rare condition. After years of advocating for herself and others, Genesis recognized a deep need for a space where patients, families, and communities impacted by sickle cell, transplant journeys, and rare diseases could find not only resources, but real connection.
RRA exists to meet that need, offering education, peer support, and advocacy rooted in empathy, cultural understanding, and resilience. This is more than an organization; it’s a movement to ensure no one facing a rare journey ever feels alone.
Our Focus:
The Trifecta
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Sickle Cell
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Transplant Survivorship
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Rare Disease Equity
Our work centers around three powerful pillars: Sickle Cell, Transplant Survivorship, and Rare Disease Equity. These focus areas guide everything we do to uplift, advocate, and connect those most often overlooked.
Our Mission
To build a strong and adaptable community by providing advocacy, education, and support.
