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 for kids under 18)
Why 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.
Join our Sickle Survivor Database
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.
Our 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.