About SickleWell
Who We Are
SickleWell Foundation exists to support people living with sickle cell disease beyond the crisis — through whole-life care, education, advocacy, and community.
We believe sickle cell support should not stop at childhood, during emergencies, or at hospital doors. People living with sickle cell deserve support through every stage of life, from childhood to adulthood and beyond.
Why We Exist
Sickle cell disease is often misunderstood and under-resourced. Care is frequently crisis-centered, leaving individuals and families to navigate complex systems on their own — especially during critical life transitions.
Too often, people are supported as children and then left without guidance as they enter adulthood, higher education, the workforce, and independent care.
We exist to change that.
Survival is not the goal. Thriving is.
A Whole-Life Approach
SickleWell is committed to lifespan support.
We walk alongside individuals and families:
As children grow into teens
As teens transition into adult care
As adults navigate health, work, finances, relationships, and joy
No one is meant to do this alone.
This is why we build the SickleWell Village — a connected, informed, and compassionate community that supports people living with sickle cell at every stage of life.
Our Framework
The SickleWell Wells
Our work flows through distinct but interconnected "Wells." Each Well represents a key area of life affected by sickle cell — and a space where intentional support can create real change.
Health & Care Navigation Well
Many individuals with sickle cell experience gaps in consistent, knowledgeable care — especially during the transition from pediatric to adult providers.
Focus
- Understanding sickle cell care beyond crises
- Navigating hospitals, providers, and systems
- Supporting transitions into adult care
Related Impact Area
- Reducing preventable emergency visits
- Improving continuity of care
Adults with sickle cell are more likely to rely on emergency departments due to lack of access to specialized adult care.
Education & Awareness Well
Sickle cell is widely misunderstood, leading to stigma, misinformation, and inadequate support in schools, workplaces, and communities.
Focus
- Education without shame
- School advocacy and resources
- Community learning and awareness
Related Impact Area
- Reducing stigma and misinformation
- Improving educational accommodations
Many students with sickle cell experience educational disruptions due to pain, fatigue, and lack of accommodations.
Emotional & Mental Wellness Well
Living with a chronic condition impacts emotional health — not only for individuals, but for caregivers and families as well.
Focus
- Emotional support
- Peer connection
- Caregiver well-being
Related Impact Area
- Addressing mental health disparities
- Reducing isolation
People living with chronic pain conditions, including sickle cell, face higher rates of anxiety and depression.
Financial & Life Stability Well
Medical costs, missed work or school, and systemic barriers can create financial strain for individuals and families affected by sickle cell.
Focus
- Financial resource navigation
- Workplace and school accommodations
- Life planning support
Related Impact Area
- Reducing financial burden
- Supporting long-term stability
Sickle cell disease is associated with significant lifetime healthcare costs and economic impact on families.
Community & Joy Well
Sickle cell does not define a person's capacity for joy, achievement, or connection.
Building the SickleWell Village
Creating connected, supportive networks
Celebrating lived experiences
Honoring stories and achievements
Creating spaces for joy, pride, and possibility
Expanding narratives beyond limitation
Related Impact Area
- Strengthening community resilience
- Expanding narratives beyond limitation
Community connection and peer support improve health outcomes and quality of life for people with chronic conditions.
Who We Serve
Individuals living with sickle cell
Parents, caregivers, and families
Loved ones and supporters
Communities seeking to learn and act with empathy
Our Commitment
We are committed to:
- Centering lived experience
- Educating with compassion
- Acting with urgency and care
- Building systems that support thrival, not just survival
An Invitation
If you are living with sickle cell, caring for someone who is, or seeking to understand and support this community — you are part of the SickleWell Village.
You belong here.