Nothing about our community without our community.
Voices for Sickle Cell believes that the people most affected by sickle cell disease should be at the center of every conversation about it. We advocate for the community while building a platform for warriors, caregivers, families, and allies to share their stories, connect with support, and help shape the change they want to see.
Artlist prompt
Three generations of a Black family on a front porch, grandmother seated, adult daughter and teenage grandson standing close behind her, easy smiles, late-afternoon light. Square frame with the subject centered: it is shown inside a circle. Bright, clean lifestyle photograph, soft natural daylight, light and uncluttered background with plenty of open space, genuine smiles and movement, candid and unposed, true-to-life skin tones, one small pop of red in wardrobe or props, shallow depth of field. No text, no logos, no watermarks, no hospital branding.
Two connected promises
- We advocate for the sickle cell community.
- We make room for the sickle cell community to lead the conversation.
Real photo needed
REAL PHOTO preferred: the founders or the first gathering. Stand-in prompt: a small planning meeting around a dining table covered with notebooks and coffee, four people leaning in, one writing, evening lamp light. Wide frame.
Why Voices for Sickle Cell was created
Voices for Sickle Cell exists to ensure that warriors, caregivers, families, and advocates are not navigating this journey alone. We create spaces for stories to be heard, information to be shared, and communities to come together around meaningful action.
Our mission
To raise awareness, amplify voices, and support the Sickle Cell community through education, advocacy, and collaboration.
Our vision
A future where every person affected by sickle cell disease is heard, supported, respected, and connected to the resources and opportunities they need to thrive.
Why our voices matter
On this site, and in this work, community members are not just
- Visitors
- Patients
- Recipients of services
- Testimonials for fundraising
They are
- Storytellers
- Experts in their own experiences
- Advisors
- Advocates
- Leaders
- Partners in the work
What we hold to
Community first
Decisions start with what the community says it needs.
Lived experience matters
People living with sickle cell are the experts on living with sickle cell.
Health equity
Care should not depend on who you are or where you live.
Respect and dignity
Every story is handled with care, and every person keeps control of their own.
Education without judgment
Plain language, trusted sources, and no wrong questions.
Action through collaboration
Progress happens when people and organizations work together.
The people behind the name
Real photo needed
REAL PHOTO. Leader headshot, chest-up, plain warm background, natural light, looking at camera. Square crop, shown as a circle. Match all leadership portraits in crop and light.
Full name
Role or title
Real photo needed
REAL PHOTO. Leader headshot, same crop and light as portrait 1.
Full name
Role or title
Real photo needed
REAL PHOTO. Leader headshot, same crop and light as portrait 1.
Full name
Role or title
Real photo needed
REAL PHOTO. Leader headshot, same crop and light as portrait 1.
Full name
Role or title
Artlist prompt
Six people of different ages, including a teenager and an older man, seated around a round table in conversation, one person speaking while the others listen closely, notebooks open. Shot at table height. Bright, clean lifestyle photograph, soft natural daylight, light and uncluttered background with plenty of open space, genuine smiles and movement, candid and unposed, true-to-life skin tones, one small pop of red in wardrobe or props, shallow depth of field. No text, no logos, no watermarks, no hospital branding.
Community Voice Advisory Council
A small group of people with lived experience who keep this website, our events, our resource priorities, and our advocacy messaging accountable to the people we serve.
Who sits on it
- Adults living with sickle cell disease
- Teen and young-adult representatives
- Parents and caregivers
- Family members
- Community advocates
- Healthcare and social-service partners
What it does
- Reviews website resource priorities
- Identifies gaps in local support
- Advises on advocacy campaigns
- Helps review storytelling ethics and consent practices
- Plans community events
Meaningful collaboration starts with listening.
We welcome partners who are committed to centering lived experience and working alongside the sickle cell community, not simply speaking for it.
Nothing about our community without our community.
Stay close to the work
Stories, events, and ways to act. A few emails a month.
Voices forSickle Cell
To raise awareness, amplify voices, and support the Sickle Cell community through education, advocacy, and collaboration.
Explore
Voices for Sickle Cell provides community education and resource information. It does not provide medical advice, diagnosis, or treatment. For urgent medical concerns, contact your healthcare provider or call 911.
SKY cannot give medical advice. For symptoms or treatment questions, contact your care team. In an emergency, call 911.