This is a big one and the sickle cell community has a lot to discuss. Join us as we share our experiences and discuss current initiative to improve ED care. What does optimal ED care look like to warriors? How can we improve the ED experience for caregivers?

Bridging the Gap between Patients & Providers on Social Media

Dr. Ahmar Zaidi

EDSC3: Who We Are and What We Do?

Dr. Caroline Freiermuth
Dr. Patricia Kavanaugh

Patient Rights and Responsibility

Dr. Michael DeBaun

The 10 Bill of Rights that every patient and caregiver should know. Why now is the time to know your rights as a patient and the importance of empowerment and why it is your responsibility.

Provider-Facing Education to Improve Care

Dr. Coretta Jenerette

Emergency Department Conversation: Amplifying Our Voices

Dominique Friend

Ways to amplify your voice when it comes to your healthcare in the Emergency Room.

Self-Advocacy- Why, When, How

Tosin Ola

Issues encountered by warriors and caregivers in health care management and how, when, and why you should advocate for yourself or your love one.

Adults with Sickle Cell Disease Caregivers Experience in Emeregency Departments

Dr. Coretta Jenerette

Program Overview & Learning Objectives


This is an educational conference planned by, and for, individuals living with sickle cell disease, our caregivers, to address issues that are most relevant to the sickle cell community. Some of the latest research in sickle cell disease will be discussed as well as management of the most common complications including treatment options; gene therapy, transplant, transfusion, and new therapeutic drugs available (or being researched) for sickle cell disease. Educational content will be provided in the form of pre-recorded, video content. Sickle cell stakeholder groups are then invited to engage in Community Conversations to discuss the top prioritized subject matter themes. The recorded educational content will serve to provide an overview of a wide array of topics related to the subject matter of the Community Conversation. Healthcare providers, industry, and other stakeholders are invited to join patients and caregivers in discussions that shape sickle cell research, education, policy, advocacy, and awareness. Patients and caregivers are the true experts of our own bodies, perceptions, and experiences. We are turning the table and invite all others to come and learn from us – Sickle Cell Citizen Scientists.




The primary audience is consumers with sickle cell disease, adults and children, their caregivers, and sickle cell advocates.


After completing this course, participants should be able to:

  • Review the most common complications of sickle cell disease
  • Discuss curative options and therapies
  • Review alternative and complimentary treatment options
  • Understand new drug therapies for sickle cell disease!