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Get Involved

Our Support Network

Comprehensive support, information and assistance for the sickle cell community.

We serve adults only.  Resources for children and families see listings below.

Sickle Cell Crisis Hotline

Call 911 for life- threatening emergencies

Hotline: 1-800-421-8453

Emergency Resource

Centers for Disease Control and Prevention (CDC)

Website: cdc.gov/sickle-cell

Phone: 1-800-CDC-INFO

Program: Sickle Cell Data Collection 

Research and Treatment

Sickle Cell Disease Association of America (SCDAA)

Website: sicklecelldisease.org

Phone: (410) 528-1555

Email: scdaaa@sicklecelldisease.org

Expert Leading organization

National Heart, Lung, and Blood Institue ( NHLBI)

Website: nhlbi.nih.gov

Phone: (301) 592-8573

Email: nhlbiinfo@nhlbi.nih.gov

RESEARCH & CLINICAL TRials

American Sickle Cell Anemia Association (ASCAA)

Website: ascaa.org

Phone: (216) 229-8600

Address: 2390 East 79th Street

Langston Hughes Cleveland Clinic

Support Organization

Florida Department of Health
Sickle Cell Program

Website: floridahealth.gov

Phone: (850) 254-4444

Statewide Coordination

Florida State Resources

Sickle Cell Disease Association of South Florida

Phone: (305) 693-0800

Location: Miami, FL

Regional chapter providing education, advocacy, and support services throughout South Florida.

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University of Florida Health - Sickle Cell Program

Phone: (352) 273-8010

Location: Gainesville, FL

Comprehensive sickle cell treatment center providing specialized medical care and research opportunities.

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Florida KidCare

Phone: 1-888-540-5437

Services: Health insurance for children

State health insurance program for children, including coverage for sickle cell disease treatment.

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Central Florida and Local Resources

Orlando Health - Sickle Cell Center

Phone: (321) 841-8558

Address: 1414 Kuhl Ave, Orlando, FL

Comprehensive sickle cell treatment center providing specialized care for children and adults.

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AdventHealth for Children

Phone: (407) 303-8687

Address: 601 E Rollins St, Orlando, FL

Pediatric sickle cell program offering comprehensive care and family support services.

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Florida Department of Health - Orange County

Phone: (407) 858-1400

Address: 6101 Lake Ellenor Dr, Orlando, FL

Local health department providing sickle cell education, testing, and referral services.

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Nemours Children's Hospital

Phone: (407) 650-7715

Address: 13535 Nemours Pkwy, Orlando, FL

Specialized pediatric sickle cell program with comprehensive treatment and research services.

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Heart of Florida United Way

Phone: (407) 855-0313

Services: Emergency assistance, referrals

Local organization providing financial assistance and connecting families to community resources.

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Pharmaceutical Company Patient Assistance Programs

Phone: Novartis: 1-800-277-2254

Pfizer: 1-844-989-7284

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Many manufacturers offer assistance programs for sickle cell medications including Hydroxyurea, Voxelotor, and Crizanlizumab.

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Financial & Insurance Resources

Medicaid Florida

Phone: 1-877-711-3662

Service: Health insurance coverage

State health insurance program providing coverage for sickle cell disease treatment and medications.

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HealthWell Foundation

Phone:  1-800-675-8416

Focus: Medication assistance

Non-profit providing financial assistance for prescription medications and insurance premiums.

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Patient Advocate Foundation

Phone: 1-800-532-5274

Service: Case management, financial aid

Providing case management services and financial aid for medical expenses and insurance issues.

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Educational & Support Resources

Sickle Cell 101

Focus: Education and community

Resources: Webinars, support groups

Comprehensive online educational platform with resources for patients, families, and healthcare providers.

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National Organization for Rare Disorders (NORD)

Phone: (203) 744-0100

Services: Patient assistance programs

Providing information, advocacy, and resources for rare diseases including sickle cell disease.

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Children's Sickle Cell Foundation

Phone: 718) 636-0040

Focus: Pediatric support

Focused on providing support, education, and resources specifically for children with sickle cell disease and their families.

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Understanding Sickle Cell Disease

Sickle Cell Resources

Learn More

Emergency Resources

Call 911 for life-threatening emergencies


Sickle Cell Crisis Hotline: 

1-800-421-8453

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