Invite Us to Speak
Every conversation has the power to change a life.
Kaya Girl Legacy offers presentations that bridge the lived experience of rare disease with the science of genetics, helping audiences better understand the importance of education, early diagnosis, patient partnership, and compassionate care.
Whether speaking to researchers, healthcare professionals, advocacy organizations, universities, or community groups, our goal is always the same: to inspire meaningful conversations that lead to lasting impact.
SPEAKING TOPICS
Helping audiences understand genetics, newborn screening, and the importance of early diagnosis through real-world stories and pratical education.
Genetic Health Education
Exploring the Patient and caregiver experience while highlighting opportunities to improve systems of care through collaboration and compassion.
Rare Disease Advocacy
Building Stronger relationships between families, clinicians, researchers, industry partners, and advocacy organizations.
Patient & Research Partnerships
Encouraging conversations that move healthcare toward earlier diagnosis, education, prevention, and patient centered innovation.
From Reactive to Proactive Healthcare
Audiences We Serve
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Healthcare Organizations
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Research Institutions
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Universities & Students
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Non Profit Organizations
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Corporate and Industry Events
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Community Groups
Featured Speaking Engagements
🎤 Quest Diagnostics Research & Development Science Forum
Featured Speaker – "Silent Code, Loud Future"
Presented on the transformative role of lived experience in advancing genetic health education, patient partnership, and rare disease research.
🎤 Quest Diagnostics – Southeast Region
Presented on genetic health education, patient advocacy, and the importance of family-centered engagement in healthcare.
🎤 American Kidney Fund (AKF)
Featured speaker and patient advocate, sharing perspectives on rare kidney disease, family advocacy, and patient-centered care.
🎤 NORD Capital Hill Days
Advocated alongside the National Organization for Rare Disorders (NORD) and the American Kidney Fund, meeting with congressional offices to advance policies impacting individuals and families affected by rare disease.
🎤 Grief Healing Podcast
Guest speaker discussing motherhood, grief, advocacy, and transforming loss into lasting purpose.
Research & Scientific Collaborations
🧬 Stanford University Genetic Counseling Team
Collaborated with Stanford genetic counselors and specialists on whole genome sequencing review, variant interpretation, and family genetic education.
🔬 UCLA Saba Laboratory
Collaborating with Dr. Julie Saba and the UCLA research team advancing scientific understanding of SGPL1 Deficiency (SPLIS).
🧬 Quest Diagnostics
Partnering with researchers and scientific teams to elevate the patient voice and strengthen collaboration between families and laboratory medicine.
Advisory & Leadership
🤝 BEACONS Network
Presented to Board of Trustees, supporting initiatives that advance equitable access to genomic medicine and patient-centered innovation.
🤝 NORD START Genetic Campaign
National advocacy collaborator helping raise awareness about the importance of genetic
🤝Community Advisory Board Sunshine Genetics FSU
🤝Newborn Screening Advisory Board Everylife Foundation
National Advocacy & Education Campaigns
🌎 Save Our Cures Campaign
Contributed to a national awareness initiative advocating for continued investment in rare disease research and innovation.
🩺 NephraWare SPLIS Educational Campaign
Collaborated on educational initiatives to increase awareness and understanding of SGPL1 Deficiency (SPLIS).
🧬 Project FIND-OUT
Contributed to a national genetic education campaign focused on increasing awareness of rare diseases, early diagnosis, and access to genetic information.
Recognition & Media
🏆 Caribbean POSH Health Advocacy Award
Recognized for leadership, advocacy, and commitment to advancing genetic health education and rare disease awareness.
📺 Seen TV
Featured in a televised story highlighting Kaya's journey, rare disease advocacy, and the mission of Kaya Girl Legacy.
Organizations We've Worked Alongside
Throughout our advocacy journey, Kaya Girl Legacy has had the privilege of collaborating with researchers, healthcare professionals, universities, nonprofit organizations, and industry leaders committed to advancing genetic health education and improving the lives of individuals and families affected by rare disease.