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Foundation For Sickle Cell Disease Research

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Foundation For Sickle Cell Disease Research

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The Foundation for Sickle Cell Disease Research (FSCDR) is the United States’ first outpatient center exclusively dedicated to the treatment of and innovative research for SCD. The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease to help maximize quality of life and improve survival for the generations of people affected with this disease. FSCDR is a comprehensive, non-profit organization that provides a platform for researchers, healthcare providers, individuals and their families living with sickle cell disease and supporters to work collaboratively in identifying barriers that are limiting creation, adoption and adherence to evidence-based screening recommendations, new therapeutics and best practices that help in the management of sickle cell disease. FSCDR understands that research must be supported with data and that education plays a key role in empowering people and affecting change; therefore, its venues directly promote these principles. As part of its extensive platform, FSCDR offers educational initiatives that help to expand the understanding of sickle cell disease through its Annual Sickle Cell Disease Research Meeting and its scholarly Journal of Sickle Cell Disease and Hemoglobinopathies. FSCDR also provides networking that facilitate collaborative learning through its membership-based Sickle Cell Research Society of America (SCRSA) and its general Corporate Engagement Forum, which also invites patient participation. Most importantly, FSCDR has created the first-ever Sickle Cell Disease and Thalassemia Patient Registry that allows researchers access to vital information for data mining, qualitative and quantitative research that can help pave the way toward a better understanding of sickle cell disease and innovations in the treatment of sickle cell disease and related disorders. The Registry also has a health record portal for individuals with sickle cell disease to keep track of their health information, receive reminder notifications, and share their health record with their doctor (s). FSDCR appreciates the benefits of being united in the common cause of sickle cell disease research and medical care with academia, pharmaceutical, biotechnology, and community organizations.

03/13/2026

Caregiving takes strength most people never see.
Kristen and Abraham Hollist share their journey of hope, faith, and determination.
Their story is a reminder that refusing to give up can open doors to a cure.
Learn more at fscdr.org

03/11/2026

The Golden Age is here.

Join us June 5–7, 2026, in Fort Lauderdale, FL for the Symposium.

Celebrate 20 years of scientific collaboration, clinical breakthroughs, and real progress for Sickle Cell Warriors.

Early bird rates for the Symposium registration expire on March 13.
Register now to take advantage of early bird pricing. Fees increase by $50 after March 13.

https://fscdr2026.eventscribe.net/

03/09/2026

Dr. Adetola A. Kassim will present Rewriting Blood: The Genetic Reset of Sickle Cell Disease Through Hematopoietic Stem Cell Transplant as part of Historic Landmarks in Research and Care of Patients with Sickle Cell Disease (1:45 PM – 3:15 PM ET, June 5, 2026).

Hematopoietic stem cell transplantation (HSCT) represents one of the most consequential advances in sickle cell disease (SCD) care. Once considered experimental, transplantation has emerged as curative therapy, redefining expectations for patients and families.

This presentation is situated within the broader Historic Landmarks session, which reflects on transformative advances that have reshaped SCD care. The panel also features Wally R. Smith, M.D., and Sophie Lanzkron, M.D., MHS. Another additional speaker will be announced soon — stay tuned for the full lineup.

We invite you to join us in Fort Lauderdale for this session.

Early Bird rates for the Symposium registration expire on March 13.

Register now to take advantage of early bird pricing. Fees increase by $50 after March 13.

https://fscdr2026.eventscribe.net/

03/06/2026

Something unexpected happened when Kristen, sitting in the audience at the Symposium, shared her story. Her son had a perfectly matched sibling, yet she had been told he was not a candidate for a stem cell transplant.

After the session ended, a hematologist approached Kristen. That moment opened the door to a life-changing treatment for her son.

Sometimes hope begins with a conversation.

Join the conversation at the Symposium in 2026.

Register Now

https://fscdr2026.eventscribe.net

03/04/2026

Changing the Future for Sickle Cell Warriors

Every day, the Foundation for Sickle Cell Disease Research (FSCDR) creates meaningful change in the lives of thousands of Sickle Cell Warriors through specialized, compassionate care at our Sickle Cell Centers of Excellence.

But our work does not stop at treatment. We are transforming the narrative around sickle cell disease through dedicated research and education.

We amplify voices that have long been unheard. We acknowledge pain that has too often been dismissed. We fight for increased research funding and equip medical professionals with the knowledge needed to better serve our community.

Our vision is bold and unwavering: to reshape the future for Sickle Cell Warriors.

Learn more at fscdr.org

03/03/2026

The Foundation for Sickle Cell Disease Research (FSCDR) is accepting applications for its Mentorship Program, a specialized opportunity for individuals who want to learn about sickle cell disease (SCD).

This program connects motivated students and professionals with experienced mentors who work directly in SCD care and research. Through guided mentorship, participants develop a deeper understanding of sickle cell disease while building the confidence and practical skills needed to pursue academic and professional pathways in healthcare.

Who should apply?
• Medical students or healthcare professionals seeking focused experience in SCD care
or interested in chronic disease management
• Public health students or professionals
• Individuals committed to building expertise and impact in healthcare and SCD management
What participants gain:
• Mentorship and guidance from clinicians, researchers, and public health leaders in SCD
• Skill development and real-world insight into SCD

Accepting applications for the 2026 Spring Cycle.
Apply by April 1, 2026

Learn more & apply

https://app.smartsheet.com/b/form/39377c8365a74cc7b95bf29df85b57c6

03/02/2026

The Foundation for Sickle Cell Disease Research (FSCDR) is honored to announce Dr. Wally Smith as a speaker for the Historic Landmarks in Research and Care of Patients with Sickle Cell Disease session at the 20th Annual Sickle Cell Disease Research and Educational Symposium & the 49th National Sickle Cell Disease Scientific Meeting.

The care of individuals living with sickle cell disease has evolved through decades of scientific discovery and clinical innovation. This Symposium session looks back at the landmark advances that reshaped understanding of the disease and ahead to the goals that will define the next era of care.

Wally R. Smith, M.D.

Professor, Virginia Commonwealth University

Dr. Wally Smith will examine the measurement, management, and prognosis of pain in sickle cell disease. Dr. Smith has authored over 100 publications and led major federally funded studies, including the Pain in Sickle Cell Epidemiology Study (PiSCES), the largest and most comprehensive adult cohort study of sickle cell pain.

Offering both historical perspective and forward-looking insight for clinicians, researchers, and community members alike, this session will explore how research has reshaped clinical practice in sickle cell disease, from a deeper understanding of pain mechanisms to the development of effective strategies for preventing serious neurologic complications. Two additional speakers will be announced soon — stay tuned for the full lineup.

We invite you to join us in Fort Lauderdale.

Register Now: https://fscdr2026.eventscribe.net/

02/27/2026

“Whatever time you have here, live life to the fullest, embrace adventure, and choose kindness toward others.”
— Andrea Hall

02/26/2026

The Foundation for Sickle Cell Disease Research (FSCDR) is pleased to announce that Dr. Hyeseon Levitsky will present Journavx (Suzetrigine) and Emerging Nonopioid Approaches to Acute Sickle Cell Pain at the Symposium.

Dr. Levitsky is an Assistant Professor at Larkin University College of Pharmacy with more than 25 years of experience in pharmacy practice, including leadership roles as Clinical Pharmacy Coordinator, Investigational Drug Services Coordinator, and Director of Pharmacy.

Her work integrates clinical trials, health-system practice, and pharmacy education, with a focus on patient education and the safe, effective use of approved and investigational therapies in hematology.

This session will focus on practical, evidence-informed approaches to the assessment and management of acute pain in sickle cell disease (SCD), with particular attention to clinical decision-making around newer non-opioid analgesic options such as Journavx (suzetrigine). The presentation will examine real-world challenges encountered in outpatient and transition-of-care settings, including appropriate medication selection, balancing opioid and non-opioid therapies, and interprofessional coordination.

Join us in Fort Lauderdale for this session!

Register Now: https://fscdr2026.eventscribe.net/

02/25/2026

Your greatest strength isn’t always visible — it lives in your spirit.
It’s in your mindset, your faith, your courage, and your ability to rise with hope each day. Even when things feel uncertain, your inner strength continues to carry you forward and shape the incredible person you are becoming.

02/24/2026

We are here to support you at our Hollywood location:
1685 S. State Road 7, Unit 4, Hollywood, FL 33023
Open 24/7

As our flagship Sickle Cell Center of Excellence, this facility represents the heart of FSCDR’s mission — delivering expert care, compassionate support, and vital resources for individuals living with sickle cell disease, whenever you need us.

📍 Hollywood, FL
🕘 Open 24/7

Learn more about our services at fscdr.org.

02/23/2026

The Foundation for Sickle Cell Disease Research (FSCDR), under the Sickle Cell Disease Workforce Development Program, offers this live webinar delivered in partnership with PRIME Education.

Price: Free

The webinar explores the latest strategies in precision diagnostics, laboratory monitoring, and imaging for sickle cell disease (SCD). Participants will gain practical insights into routine lab tests, newborn screening interpretation, and hemoglobin evaluation, as well as monitoring iron overload in patients receiving regular transfusions. The session will also highlight emerging evidence on inflammatory and coagulation markers, biomarkers for organ damage, and advanced imaging techniques such as transcranial Doppler and MRI for stroke prevention. Attendees will leave with actionable knowledge to enhance diagnostic accuracy, improve patient monitoring, and optimize care across the SCD continuum.

The webinar will cover:

• Routine Laboratory Tests for Sickle Cell Disease Diagnosis and Monitoring; Point-of-Care Resource: Interpreting NBS Results and Hemoglobin Evaluation
• Measuring Iron Overload in Patients Receiving Routine Transfusions
• Latest Evidence for Inflammation and Coagulation Markers in Sickle Cell Disease
• The Role of Biomarkers in Assessing Sickle Cell-Related Organ Damage
• Advanced Imaging for Stroke Prevention & Diagnosis: Transcranial Doppler (TCD) Screening Protocols; Interpretation of High-Risk TCD findings; Utility of MRI for Stroke and Silent Infarcts

Who Should Attend:

Physicians, advance practice providers (NP/PA), nurses, pharmacists, psychologists, and social workers caring for patients with sickle cell disease.

Faculty

Betty S. Pace, M.D.
Francisco J. Tedesco Distinguished Chair of Pediatric Hematology/Oncology
Professor of Pediatrics, Biochemistry and Molecular Biology, and Graduate Studies
Director, Sickle Cell Program Telehealth Center
Augusta University

Patrick C. Hines, M.D., PhD
Associate Professor, Department of Pediatrics, Wayne State University School of Medicine
Laboratory Director, Functional Fluidics

Anthony Hall, MDCM, FACS, FAANS
Chief Medical Officer, The Foundation for Sickle Cell Disease Research
Assistant Professor, Herbert Wertheim Florida International University College of Medicine
Associate Professor, Nova Southeastern College of Osteopathic Medicine and the College of Allopathic Medicine

Register Now:
https://primeinc.org/virtual/precision-practice-laboratory-imaging-advances-sickle-cell-disease?mc_cid=f52d1e414b&mc_eid=UNIQID

Address

1685 South State Road 7, Unit 4
Hollywood, FL
33023

Opening Hours

Monday	8am - 5pm
Tuesday	8am - 5pm
Wednesday	8am - 5pm
Thursday	8am - 5pm
Friday	8am - 5pm

Telephone

+18444465744

Website

http://www.FSCDR.org/

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