SickleSafe Foundation
Family and community advocate standing together in support of sickle cell families

SickleSafe Foundation

Reducing sickle cell mortality and suffering. Completely free for the families we serve.

A family-centered nonprofit offering support, education, and community around the full sickle cell journey.

DonateGet the Family Resource GuideHow SickleSafe fits
150,000

Nigerian SCD births a year

50%+

Under-five mortality without treatment

100,000

US patients with sickle cell

0

Service fees we charge families

Florida HQCCC-Inspired ModelNigeria Pilot FocusFamily Resource GuideSickleSafe LLC

Families Served

0+

Pilot counter opens as families enter programs.

States Reached

0

Florida governance with national outreach ahead.

Programs Active

0

Lifecycle, cross-cutting, and event programs designed.

Patient, caregiver, and care navigator reviewing support technology together

SickleSafe LLC

The sister company building the technology platform.

SickleSafe LLC is the separate for-profit operating company developing a patient-built platform for earlier sickle cell crisis prediction, care coordination, and long-term monitoring support.

The Foundation exists so families who need support are not excluded by cost, geography, or circumstance. The LLC exists to build and validate the technology infrastructure that can serve patients, caregivers, clinicians, and institutional partners.

What it does

Uses continuous physiological monitoring and personalized AI prediction to help families and care teams act earlier, described publicly at a high level while clinical and filing work continues.

How alerts work

Designed around calm, tiered notifications for the patient, caregiver, and clinician, with practical next steps coordinated through approved care pathways.

How it relates to the Foundation

The entities are legally separate and ethically firewalled. Foundation services stay free and unconditional; technology access never becomes a condition for disease-modifying treatment.

100K

US patients with sickle cell

20M

Patients globally

0

FDA-cleared predictive products today

Program pillars

Patient, caregiver, and community health worker in a supportive care setting

Patient Lifecycle Care

Support organized around where a family is in the sickle cell journey.

Family receiving support in a welcoming community space

Family Support

Practical care for parents, caregivers, siblings, and the whole home.

Families and advocates gathered in community

Community

Events, education, and joy-centered experiences that make families feel less alone.

Our programs

Support for the whole family

View all programs
Family meeting with a community health worker for active sickle cell support

Active SCD Management

A free support program for families actively managing sickle cell disease, combining monitoring support, community health worker connection, education, and care navigation.

Family supporting a young person during post-crisis recovery

Post-VOC Recovery

A continuity program for families after a crisis, built to help them settle back into daily life with support and connection.

Young adult and caregiver in a calm follow-up care conversation

Post-Gene-Therapy Monitoring

Long-term family support for patients after advanced therapy, provided free to families and ethically separated from commercial partnerships.

Caregivers gathered in a supportive group conversation

Family and Caregiver Support

Education, peer connection, practical referrals, and family support for the people carrying daily care responsibilities.

Community health workers learning together in a training room

CHW Training

Training for community health workers so local teams can hold the door open for families closer to home.

Family education conversation with parents and children

Patient and Family Education

Plain-language education for families in the languages and formats they can actually use.

Family seated together as their story is honored with care

From the families we serve

Stories will appear here with consent once programs are active. Until then, this space is held for families, children, caregivers, and those remembering someone they love.

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We do not ask for medical history in this form. Patient privacy is handled with healthcare-grade care.

Help us keep every service free.

Your gift helps us hold the door open for families facing sickle cell disease.

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