SICKLE CELL CITIZEN SCIENTISTS: HARNESSING THE POWER OF THE PATIENT & CAREGIVER VOICE

Welcome to the 7th Annual Sickle Cell Patient & Family Educational Symposium (The Warrior’s Convention).

Due to COVID-19, the Symposium will be held entirely online.

This year, we are doing things a bit differently. The entire Convention will focus on a series of Community Conversations featuring Warrior Patients and Caregivers. With the theme “Citizen Scientist: Harnessing the Power of the Patient and Caregiver Voice”, we will amplify the knowledge of our community and share these learned-lessons with any who wish to participate. As part of our commitment to ensure sickle cell patients and caregivers remain directly involved and engaged in the Sickle Cell Consortium efforts, we have developed a plan to maintain the direct interaction of the patient and caregiver community with industry, government, and other groups substituting the in-person experience. We’re excited to go on this journey with you.

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As you register, you will have the option to select the Track(s) you will join and the Special Activities in which you will participate. You’ll notice on the agenda, that instead of individual sessions, we are having collective Community Conversations.

Community Conversations

There will be a range of pre-recorded educational sessions available for review prior to the Community Conversation. Participants are encouraged to view these educational sessions at your convenience. Pre-recorded educational sessions will be available beginning Friday, November 13, 2020.


WHAT IS A CURE?

What curative treatments and options are being researched? What’s available now? Is it really a “cure”? What does an ideal cure look like to sickle cell warriors? What do we, patients and caregivers” want to see in a cure?

[START LEARNING]


SICKLE CELL SCIENCE: BEYOND THE RED BLOOD CELL

What exactly is happening when we go into sickle cell crisis? We know about the sickle mutation that causes the hemoglobin to stick together causing the red blood cell to become sickle-shaped. Let’s talk about this and everything else.  *This will be the launch to a Warrior University class series to discuss the science of sickle cell.

[START LEARNING]


COMPLIMENTARY & ALTERNATIVE METHODS of HEALTHCARE

Many of the most effective therapies for sickle cell occur outside of the hospital and clinic setting. This Community Conversation focuses on alternative treatments and natural therapies. Join warriors and caregivers as we discuss how we treat pain, inflammation, and other disease complications without pharmaceutical intervention.

[START LEARNING]

EMERGENCY DEPARTMENT CARE

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?

[START LEARNING]

DISEASE COMPLICATIONS

This conversation will focus on sharing our experiences with some of the complications of sickle cell disease. What are the prevalent complications? How can we recognize them and what do we do about it? Patients and caregivers will share their experiences.

[START LEARNING]

MENTAL HEALTH

Another big conversation. Warriors and our caregivers experience higher rates of depression, anxiety, and PTSD, than the general population. It’s ok to not be ok. Let’s talk about it. Share our experiences, coping mechanisms at home, and where to find resources to help. 

[START LEARNING]

CAREGIVERS

This conversation will focus on the experiences of the Caregivers of Sickle Cell Warriors who are so important to the management of their day-to-day lives. What have they learned to make caring for their loved ones easier? How do they care for themselves to make sure they are healthy and available for their Warrior?

[START LEARNING]

7th Annual

Sickle Cell

Patient and Family

Symposium

 

This Year We’re Virtual! – Registration Opens TUESDAY, October 21st!

Register now to reserve your spot. Remember, this is the only conference in the sickle cell community organized entirely by Warriors and Caregivers for Warriors and Caregivers. We welcome everyone living with sickle cell, warriors, parents, teens, and understanding health care professionals. See you soon!

2020 WC4 copy

Hosted By

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Program Overview & Learning Objectives

PROGRAM OVERVIEW

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.

TARGET AUDIENCE

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

LEARNING OBJECTIVES

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!

  • 25 +

    speakers

  • 45 +

    Sessions

  • 30 +

    Topics

  • 300 +

    Participants

PARTICIPATE

 WANT TO PARTICIPATE? READ ON..

There are many ways to participate in the Convention.

REGISTER and join us in dozens of workshops, panels, and round table discussions. Share your experiences and your knowledge with your fellow Warriors.

EXHIBIT with us. This year we are excited to include an exhibition hall at the Convention. We welcome corporate, government, community, non-profit and Warrior exhibitors to rent booth space for the duration of the Convention.

PRESENT a poster of your research or advocacy work. Submit an abstract of your research or advocacy work through the abstract portal. Bring a poster of your work to the Convention. Select abstracts will be invited to give an oral presentation during the Convention.

THANK YOU TO OUR PREVIOUS SPONSORS AND SUPPORTERS