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

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.

Cross-Cutting Programs

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.

Public health professionals reviewing privacy-conscious community evidence

RWE for Public Health

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

Families sharing a joyful community experience outdoors

Family Experiences

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

Student with family support in a hopeful academic setting

Scholarships

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

Caregiver and advocate reviewing family resource materials

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.

Signature Events

Families and athletes participating in a charity run