Our programs

Programs follow the CCC-inspired structure: patient lifecycle services, cross-cutting family support, and signature events that keep the work funded and visible.

Therapy is provided unconditionally. Wearable compliance earns non-essential incentives only — never gates access to disease-modifying medication. The therapeutic floor is non-negotiable.

Patient Lifecycle Programs

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.

Post-VOC Recovery

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

Post-Gene-Therapy Monitoring

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

Family and Caregiver Support

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

Cross-Cutting Programs

CHW Training

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

Patient and Family Education

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

RWE for Public Health

Privacy-conscious, population-level learning for public health partners, kept separate from personal family services.

Family Experiences

Respite days, camps, trips, and community moments that give families joy outside the medical context of the disease.

Scholarships

Education support for sickle-cell-affected youth, especially students pursuing healthcare and community service.

Resource Guide

A downloadable family guide for navigation, support services, school accommodations, transportation, and community resources.

Bereavement Support

A grief and remembrance program for families who have lost a child to sickle cell disease.