Our Sickle Survivor Database
Strengthening the Future of Post-Treatment Care
The journey beyond sickle cell disease doesn’t end with treatment — and neither should the support survivors receive. By joining the Sickle Survivor Database, you become part of a growing national network of individuals who have undergone bone marrow transplant or gene therapy and are navigating life after transformative treatment.
This database helps us understand the real-world experiences of survivors, identify long-term needs, and shape programs that support whole-person wellness. Your participation is voluntary, confidential, and deeply impactful.
Who Can Join ?
Anyone who identifies as a Sickle Survivor, including:
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Those who have had a successful bone marrow transplant or gene therapy
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Survivors managing post-treatment challenges such as GVHD or chronic complications
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Individuals who experienced failed, partial, or discontinued therapies
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Adult, adolescent, and pediatric survivors (caregiver permission is required)
Why You Should Join?
Contribute to Better Survivorship Care
Your lived experience helps inform research, resources, and tools that support others walking a similar path.
Strengthen the Survivor Community
Help us build the first centralized network of Sickle Survivors — including those with successful outcomes, post-treatment complications (like GVHD), or failed and partial therapies.
Influence Policy, Advocacy, & Education
Data from this registry helps elevate survivor voices and ensures healthcare systems prioritize post-therapy support.
Access Tailored Survivorship Resources
Be the first to receive program updates, wellness workshops, peer-support opportunities, and mental health tools designed specifically for survivors.
Be Part of Something Transformative
By joining the Sickle Survivor Database, you help create a future where survivors receive the long-term care, compassion, and resources they deserve.
Your journey is powerful.
Your experience is data.
Your voice shapes the future.