Care Partners & Families
Our care partners - parents, spouses, siblings, kids, donors, and community - often play a critical but overlooked role in the success of cell and gene-based therapies for sickle cell disease.
Understanding the Treatment Journey
Navigating sickle cell disease — especially the path toward transformative therapies — can feel complex and overwhelming for families and care partners. Each phase of the treatment journey comes with its own questions, responsibilities, and emotional weight. At Sickle Cell Prodigy, we help you understand what to expect so you can support your loved one with confidence and clarity.
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From early conversations about eligibility and risks, to clinical evaluations, hospital stays, recovery milestones, and long-term follow-up, we break down each step into understandable, manageable pieces. We provide guidance on how to prepare for major transitions, what signs and symptoms to monitor, how to communicate effectively with care teams, and how to balance your own wellbeing as a care partner.
The treatment journey doesn’t end with transplant or gene therapy — and neither does our support. We help families navigate late effects, survivorship care, mental health needs, and the ongoing adjustments that come with life after a transformative therapy.
You don’t have to figure it out alone. We’re here to help you stay informed, empowered, and connected throughout the entire journey.
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Cell and gene-based therapies can feel overwhelming, especially for those supporting a loved one through treatment. Our goal is to help donors and care partners understand each step of the process — from initial evaluation to recovery — with simple explanations, visuals, and real stories.
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At Sickle Cell Prodigy, we honor the essential role that care partners and families play throughout the treatment journey, from daily symptom management to navigating transformative therapies. We provide trusted, accessible resources designed to support your wellbeing, strengthen communication with healthcare teams, and help you confidently guide your loved one through every stage of care.
Access the Care Partner Handbook & Wellness Toolkit
Patients and families can sometimes face challenges when trying to manage the health needs of their sickle survivor post-treatment. The lack of standardized data makes it difficult for care partners to track symptoms, monitor recovery, and recognize unmet needs. This gap slows progress in defining long-term effects and tailoring survivorship care for the sickle cell community.
Our Care Partner Handbook and Wellness Toolkit were created to bridge that gap and empower families with practical guidance, emotional support strategies, and step-by-step tools for navigating life on the other side of sickle cell disease.
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If you would like digital access to either resource, please contact us directly. A member of our team will follow up with next steps and provide the materials that best fit your needs.
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We’re here to support you — every step of the way.​​
