Sickle cell disease

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8FDA treatments105Active trials41Specialists8Treatment centers22Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Sickle Cell Disease is treated with 6 medications in our database, including OXBRYTA, DROXIA, HYDREA, Hydroxyurea, L-Glutamine, and 1 more. 4 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Pfizer, Bristol Myers Squibb, Emmaus. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Sickle Cell Disease treatment below.

Also known as:

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Sep 2026Evaluation of the Efficacy of Iloprost in the Management of Vaso-occlusive Crises in Adult Patients With Sickle Cell Disease

University Hospital, Rouen — PHASE3

TrialNOT YET RECRUITING
Apr 2026Functional Ovarian Reserve in Sickle Cell Disease

St. Jude Children's Research Hospital

TrialRECRUITING
Apr 2026Prophylactic Transfusion In Pregnant in Women With Sickle Cell Disease

Emory University — PHASE4

TrialRECRUITING
Mar 2026Morphine Clearance and Glomerular Filtration in Sickle Cell Patients in Crisis in Intensive Care

University Hospital, Tours — NA

TrialRECRUITING
Mar 2026SickleFit Randomized Control Trial

Duke University — NA

TrialNOT YET RECRUITING
Mar 2026Open-Label Extension Study to Pioneer Study 6058-SCD-101

Fulcrum Therapeutics — PHASE2

TrialNOT YET RECRUITING
Feb 2026Efficacy Safety Study of Gene Therapy for Sickle Cell DiseaseSCD Using Autologous CD34+ Cells Transduced ex Vivo, Carrying a Corrected Globin Gene and a Silencing RNA.

Assistance Publique - Hôpitaux de Paris — PHASE1, PHASE2

TrialRECRUITING
Feb 2026Writing Relaxing Beats in Adolescents Who Have Sickle Cell Disease

Mayo Clinic — NA

TrialRECRUITING
Feb 2026Safety of Anumigilimab (CSL324) in Adults With Sickle Cell Disease (SCD)

CSL Behring — PHASE2

TrialRECRUITING
Jan 2026Study of a Single Dose of a 21-valent Pneumococcal Conjugate Vaccine in Children and Adolescents With Sickle Cell Disease

Sanofi — PHASE3

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

8 available

Lyfgenia

LOVOTIBEGLOGENE AUTOTEMCEL· Genetix Biotherapeutics Inc.■ Boxed WarningOrphan Drug
1 INDICATIONS AND USAGE LYFGENIA is indicated for the treatment of patients 12 years of age or older with sickle cell disease and a history of vaso-occlusive events. LYFGENIA is an autologous hematopo

1 INDICATIONS AND USAGE LYFGENIA is indicated for the treatment of patients 12 years of age or older with sickle cell disease and a history of vaso-occlusive events. LYFGENIA is an autologous hematopoietic stem cell-based gene therapy indicated for the treatment of patients 12 years of age or older with sickle cell disease and a history of vaso-occlusive events. ( 1 ) Limitations of Use Following treatment with LYFGENIA, patients with α-thalassemia trait (-α3.7/-α3.7) may experience anemia with erythroid dysplasia that may require chronic red blood cell transfusions. LYFGENIA has not been studied in patients with more than two α-globin gene deletions. ( 1 ) Limitations of Use Following treatment with LYFGENIA, patients with α-thalassemia trait (-α3.7/-α3.7) may experience anemia with erythroid dysplasia that may require chronic red blood cell transfusions [see Adverse Reactions (6.1) ] . LYFGENIA has not been studied in patients with more than two α-globin gene deletions.

CASGEVY

EXAGAMGLOGENE AUTOTEMCEL· Vertex Pharmaceuticals IncorporatedOrphan Drug
1. INDICATIONS AND USAGE CASGEVY is indicated for the treatment of patients aged 12 years and older with: sickle cell disease (SCD) with recurrent vaso-occlusive crises transfusion-dependent β - thala

1. INDICATIONS AND USAGE CASGEVY is indicated for the treatment of patients aged 12 years and older with: sickle cell disease (SCD) with recurrent vaso-occlusive crises transfusion-dependent β - thalassemia (TDT) CASGEVY is an autologous genome edited hematopoietic stem cell-based gene therapy indicated for the treatment of patients aged 12 years and older with: sickle cell disease (SCD) with recurrent vaso-occlusive crises (VOCs). ( 1 ) transfusion-dependent β-thalassemia (TDT). ( 1 )

ADAKVEO

CRIZANLIZUMAB· Novartis Pharmaceuticals CorporationOrphan Drug
1 INDICATIONS AND USAGE ADAKVEO ® is indicated to reduce the frequency of vaso-occlusive crises (VOCs) in adults and pediatric patients aged 16 years and older with sickle cell disease. ADAKVEO is a s

1 INDICATIONS AND USAGE ADAKVEO ® is indicated to reduce the frequency of vaso-occlusive crises (VOCs) in adults and pediatric patients aged 16 years and older with sickle cell disease. ADAKVEO is a selectin blocker indicated to reduce the frequency of vasoocclusive crises in adults and pediatric patients aged 16 years and older with sickle cell disease.

DROXIA

HYDROXYUREA· Waylis Therapeutics LLC■ Boxed WarningOrphan Drug
1 INDICATIONS AND USAGE DROXIA is indicated to reduce the frequency of painful crises and to reduce the need for blood transfusions in patients with sickle cell anemia with recurrent moderate to sever

1 INDICATIONS AND USAGE DROXIA is indicated to reduce the frequency of painful crises and to reduce the need for blood transfusions in patients with sickle cell anemia with recurrent moderate to severe painful crises. DROXIA is an antimetabolite indicated to reduce the frequency of painful crises and to reduce the need for blood transfusions in patients with sickle cell anemia with recurrent moderate to severe painful crises. ( 1 )

Endari

GLUTAMINE· Emmaus Medical, Inc.Orphan Drug
1 INDICATIONS AND USAGE Endari is indicated to reduce the acute complications of sickle cell disease in adult and pediatric patients 5 years of age and older. ENDARI is an amino acid indicated to redu

1 INDICATIONS AND USAGE Endari is indicated to reduce the acute complications of sickle cell disease in adult and pediatric patients 5 years of age and older. ENDARI is an amino acid indicated to reduce the acute complications of sickle cell disease in adult and pediatric patients 5 years of age and older. ( 1 )

OXBRYTA

VOXELOTOR· Global Blood Therapeutics, Inc, A subsidiary of Pfizer Inc.Orphan Drug
1 INDICATIONS AND USAGE OXBRYTA is indicated for the treatment of sickle cell disease (SCD) in adults and pediatric patients 4 years of age and older. This indication is approved under accelerated app

1 INDICATIONS AND USAGE OXBRYTA is indicated for the treatment of sickle cell disease (SCD) in adults and pediatric patients 4 years of age and older. This indication is approved under accelerated approval based on increase in hemoglobin (Hb) [see Clinical Studies (14) ] . Continued approval for this indication may be contingent upon verification and description of clinical benefit in confirmatory trial(s). OXBRYTA is a hemoglobin S polymerization inhibitor indicated for the treatment of sickle cell disease in adults and pediatric patients 4 years of age and older. This indication is approved under accelerated approval based on increase in hemoglobin (Hb). Continued approval for this indication may be contingent upon verification and description of clinical benefit in confirmatory trial(s). ( 1 )

FERRIPROX

DEFERIPRONE· Chiesi USA, Inc.■ Boxed Warning

treatment of transfusional iron overload in adult and pediatric patients 8 years of age and older with sickle cell disease

L-Glutamine

L-glutamine· Emmaus

Detailed copay and financial assistance information is not publicly available for this medication at this time. Please consult your pharmacist or the manufacturer's official patient support program fo

Clinical Trials

20 recruitingView all trials with filters →
Other20 trials
Study of the Role of Genetic Modifiers in Hemoglobinopathies
Actively Recruiting
PI: Petros Kountouris, PhD (Cyprus Institute of Neurology and Genetics) · Sites: Boston, Massachusetts; Luanda +24 more · Age: 299 yrs
Glucose Metabolism in Sickle Cell Disease
Active
PI: Victor Gordeuk, MD (University of Illinois at Chicago) · Sites: Chicago, Illinois · Age: 1899 yrs
Arterial Function Parameters and Transcranial Doppler Velocity in Paediatric Patients With Sickle Cell Disease
Actively Recruiting
· Sites: Kingston, Saint Andrew Parish · Age: 416 yrs
Functional Ovarian Reserve in Sickle Cell Disease
Actively Recruiting
PI: Christine Yu, MD (St. Jude Children's Research Hospital) · Sites: Memphis, Tennessee · Age: 1018 yrs
Sickle Cell Disease Obstetric Multi-Disciplinary Care Programme
Active
PI: Leshana St. Jean, PhD (Vanderbilt University Medical Center) · Sites: Accra; Accra +1 more · Age: 1845 yrs
Identifying Barriers and Strategies to Support Self-efficacy for Medication Adherence With Text Messaging
Active
PI: Robert Cronin, MD, MS (Vanderbilt University) · Sites: Nashville, Tennessee · Age: 1270 yrs
Sickle Cell Hemoglobinopathies and Bone Health
Active
PI: Biree Andemariam, MD (UConn Health) · Sites: Farmington, Connecticut · Age: 1845 yrs
Dietary Intake and Dietary Behaviors in Adults With Sickle Cell Disease
Actively Recruiting
PI: Nicole M Farmer, M.D. (National Institutes of Health Clinical Center (CC)) · Sites: Bethesda, Maryland · Age: 18120 yrs
Lung Ultrasound in Pediatric Acute Chest Syndrome
Actively Recruiting
PI: Aurélie HAYOTTE, MD (Assistance Publique - Hôpitaux de Paris) · Sites: Paris · Age: 017 yrs
Phenotypic and Transcriptomic Description of Megakaryocytes in Sickle Cell Patient
Actively Recruiting
PI: Pierre COUGOUL, MD (University Hospital, Toulouse) · Sites: Toulouse, France · Age: 1899 yrs
ESCORT-HU Extension: European Sickle Cell Disease Cohort - Hydroxyurea - Extension Study
Active
PI: Mariane de Montalembert, MD, PhD (Hospital Necker enfants malades) · Sites: Amiens; Amiens +85 more · Age: 299 yrs
Sickle-cell Disease Registry of the GPOH
Actively Recruiting
PI: Joachim Kunz, Dr. (Center for Child and Adolescent Medicine, Universi) · Sites: Heidelberg, Baden-Wurttemberg · Age: 0100 yrs
Cooperative Assessment of Late Effects for SCD Curative Therapies
Actively Recruiting
PI: Michael R DeBaun, MD, MPH (Vanderbilt University Medical Center) · Sites: Washington D.C., District of Columbia; Atlanta, Georgia +3 more · Age: 465 yrs
Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell Disease
Actively Recruiting
PI: Julie Kanter, MD (University of Alabama, Birmingham (UAB)) · Sites: Birmingham, Alabama; Phoenix, Arizona +7 more · Age: 1899 yrs
Gene Therapy Communication: Use of a Needs Assessment to Drive Decision-AIDS for Gene Therapy for Rare Diseases (GENETX)
Actively Recruiting
PI: Liza-Marie Johnson, MD, MPH, MSB (St. Jude Children's Research Hospital) · Sites: Memphis, Tennessee · Age: 1835 yrs
RADeep Multicenter European Epidemiological Platform for Patients Diagnosed With Rare Anemia Disorders (RADs)
Actively Recruiting
PI: María del Mar Manú Pereira, PhD (Vall d'hebron Research Institute - Vall d'Hebron R) · Sites: Barcelona, Catalonia · Age: 0100 yrs
A Long-Term Follow-Up Study of Participants With Sickle Cell Disease or Transfusion Dependent β-Thalassemia Who Received EDIT-301
Enrolling by Invitation
· Sites: Oakland, California; Aurora, Colorado +16 more · Age: 1250 yrs
Blood Collection for Research Related to Certain Diseases Involving Blood Vessels
Enrolling by Invitation
PI: Swee Lay Thein, M.D. (National Heart, Lung, and Blood Institute (NHLBI)) · Sites: Bethesda, Maryland; Fairfax, Virginia · Age: 18100 yrs
Long-term Follow-up of Subjects with Sickle Cell Disease Treated with Ex Vivo Gene Therapy
Enrolling by Invitation
PI: Anjulika Chawla, MD (bluebird bio, Inc.) · Sites: Birmingham, Alabama; Oakland, California +14 more · Age: 253 yrs
Molecular and Cellular Basis of Severe Forms of Dengue in Sickle Cell Patients
Actively Recruiting
PI: Maryse Etienne-Julan, MD PhD (CHU de la Guadeloupe) · Sites: Pointe-à-Pitre · Age: 625 yrs

Specialists

Showing 25 of 41View all specialists →
AM
Ann Haight, MD
TWIN FALLS, ID
Specialist
PI on 3 active trials1 Sickle cell disease publication
TM
Theo Heller, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 8 active trials
LP
Leshana St. Jean, PhD
Specialist
PI on 2 active trials
JM
Jane Hankins, MD, MS
MEMPHIS, TN
Specialist
PI on 4 active trials
DM
Daniel S Tsze, MD, MPH
NEW YORK, NY
Specialist
PI on 1 active trial
AM
Aniket Saha, MD
GREENVILLE, SC
Specialist
PI on 1 active trial1 Sickle cell disease publication
MM
Matthew M Hsieh, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 4 active trials
SP
Staci M Peron, Ph.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 8 active trials
RM
Rainard Fuhr, Dr. med.
Specialist
PI on 2 active trials
AM
Ariel Koren, MD
Specialist
PI on 10 active trials1 Sickle cell disease publication
SM
Suhag Parikh, MD
CHICAGO, IL
Specialist
PI on 1 active trial
MM
Michael R DeBaun, MD, MPH
NASHVILLE, TN
Specialist
PI on 4 active trials
DM
David Nathan, MD
Specialist
PI on 2 active trials
MM
Mariane de montalembert, MD/PhD
Specialist
PI on 1 active trial
YM
Yi-Bin A Chen, M.D.
BOSTON, MA
Specialist
PI on 1 active trial
JM
Jeremie Estepp, MD
MEMPHIS, TN
Specialist
PI on 4 active trials
NM
Nirmish Shah, MD
DURHAM, NC
Specialist
PI on 3 active trials
JP
James Klosky, PhD
ATLANTA, GA
Specialist
PI on 1 active trial
DS
Daniela Mathov, Student
Specialist
PI on 1 active trial
CM
Courtney F Joseph, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 3 active trials
JD
John Messina, Pharm D
Specialist
PI on 1 active trial
RP
Ricardo Hermosilla, PhD
Specialist
PI on 1 active trial
BM
Brandi M Pernell, DNP, MSPH
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

National Institutes of Health Clinical Center

📍 Bethesda, Maryland

👤 Payal P Khincha, M.D.

👤 Christopher Grunseich, M.D.

⚗️ Trial Site

Arkansas Children's Hospital

📍 Little Rock, Arkansas

⚗️ Trial Site

Boston Children's Hospital

📍 Boston, Massachusetts

⚗️ Trial Site

Massachusetts General Hospital

📍 Boston, Massachusetts

👤 Matthew Frigault, MD

👤 Janssen Research & Development, LLC Clinical Trial

⚗️ Trial Site

University of Michigan

📍 Ann Arbor, Michigan

👤 Janssen Research & Development, LLC Clinicaltrial

⚗️ Trial Site

University of California San Diego

📍 La Jolla, California

⚗️ Trial Site

Riley Hospital for Children

📍 Indianapolis, Indiana

⚗️ Trial Site

Children's National Hospital

📍 Washington D.C., District of Columbia

Financial Resources

14 resources
Lyfgenia(LOVOTIBEGLOGENE AUTOTEMCEL)Genetix Biotherapeutics Inc.
CASGEVY(EXAGAMGLOGENE AUTOTEMCEL)Vertex Pharmaceuticals Incorporated
ADAKVEO(CRIZANLIZUMAB)Novartis Pharmaceuticals Corporation
DROXIA(HYDROXYUREA)Waylis Therapeutics LLC
Endari(GLUTAMINE)Emmaus Medical, Inc.
OXBRYTA(VOXELOTOR)Global Blood Therapeutics, Inc, A subsidiary of Pfizer Inc.
FERRIPROX(DEFERIPRONE)Chiesi USA, Inc.

The Assistance Fund — Sickle cell disease

The Assistance Fund

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

Patient Services Inc — Sickle cell disease

Patient Services Inc

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

Good Days — Sickle cell disease

Good Days

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

HealthWell Foundation — Sickle cell disease

HealthWell Foundation

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

NORD Patient Assistance — Sickle cell disease

NORD Patient Assistance

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

Patient Advocate Foundation — Sickle cell disease

Patient Advocate Foundation

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Accepting applications

PAN Foundation — Sickle cell disease

PAN Foundation

Sickle cell disease

Verified 5d ago
Foundation Grant
foundation grant
Currently closed
Apply Get notified when open

8 travel grants are also available for Sickle cell disease patients — see Travel Grants below ↓

Travel Grants

8 grants

Super T's Mast Cell Foundation Patient Support Grants

Super T's Mast Cell Foundation

Apply ↗

Emmaus Life Sciences Commercial Co-Payment Assistance Program for Endari

Emmaus Life Sciences

This program provides financial assistance to commercially insured patients aged five and older who are prescribed Endari for sickle cell disease. Applicants must meet undisclosed financial eligibility requirements and submit a Patient Financial Assistance Application.

Apply ↗

PAN: Sickle Cell Disease (Medicare)

Patient Access Network Foundation

Patients must have Medicare or Medicaid insurance and a valid sickle cell disease diagnosis to qualify for this $2,000 annual benefit. The program is restricted to residents of the United States and Puerto Rico and is defined as a needs-based assistance fund.

Apply ↗Up to $2,000

Bristol Myers Squibb Patient Assistance

Bristol-Myers Squibb

Apply ↗

Sickle Cell Disease Financial Assistance Program

The Assistance Fund

The Assistance Fund provides financial assistance to patients and families for out-of-pocket medical costs like copayments, coinsurance, and deductibles. Eligibility is generally based on having a diagnosis covered by their specific disease programs and demonstrating financial need.

Apply ↗

Bristol-Myers Squibb Patient Assistance Program Application Form

Bristol-Myers Squibb

Apply ↗

Maryland Sickle Cell Disease Association Transportation Assistance Program

Maryland Sickle Cell Disease Association

Apply ↗

The Assistance Fund - Sickle Cell Disease (SCD) Financial Assistance

Apply ↗

Community

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Latest news about Sickle cell disease

4 articles
NewsUNITERAREApr 20, 2026
Fund Update: PAN Foundation — Sickle cell disease Sickle cell disease fund is currently closed
The PAN Foundation's financial assistance program for sickle cell disease patients is currently closed and not accepting new applications. This program helps pa
Clinical trialUNITERAREApr 3, 2026
New Recruiting Trial: Functional Ovarian Reserve in Sickle Cell Disease
Researchers at St. Jude Children's Research Hospital are looking for people with sickle cell disease to participate in a study about egg health and fertility. T
Clinical trialUNITERAREApr 3, 2026
New Recruiting Trial: Prophylactic Transfusion In Pregnant in Women With Sickle Cell Disease
Researchers at Emory University are looking for pregnant women with sickle cell disease to join a study about blood transfusions. The study will test whether gi
NewsUNITERAREApr 3, 2026
Fund Update: PAN Foundation — Sickle cell disease Fund Sickle cell disease fund is currently closed
The PAN Foundation's financial assistance program for sickle cell disease patients is currently closed and is not accepting new applications. This program previ
See all news about Sickle cell disease

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Sickle cell disease

What is Sickle cell disease?

Sickle Cell Disease is treated with 6 medications in our database, including OXBRYTA, DROXIA, HYDREA, Hydroxyurea, L-Glutamine, and 1 more. 4 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Pfizer, Bristol Myers Squibb, Emmaus. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Sickle Cell Disease treatment below.

How is Sickle cell disease inherited?

Sickle cell disease follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Sickle cell disease typically begin?

Typical onset of Sickle cell disease is infantile. Age of onset can vary across affected individuals.

Are there clinical trials for Sickle cell disease?

Yes — 20 recruiting clinical trials are currently listed for Sickle cell disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Sickle cell disease?

25 specialists and care centers treating Sickle cell disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Sickle cell disease?

6 FDA-approved treatments and 14 patient support programs are currently tracked on UniteRare for Sickle cell disease. See the treatments and support programs sections for copay assistance, eligibility, and contact details.