About The Convention

ABOUT THE CONVENTION

The Annual Sickle Cell Disease Patient & Family Educational Symposium is the only national sickle cell convention designed, created, and hosted entirely by the sickle cell patient and family community. Now in its seventh year, the meeting has grown in size and scope. Each year the meeting is hosted by a partnership of sickle cell community-based organizations, patients, and advisors. This year, the 2020 Convention will be entirely digital and hosted by the credentialed partners of the Sickle Cell Consortium. In July we presented the first fully digital, collaborative sickle cell patient engagement event as part of our annual Leadership Summit. We are excited to bring back the successful elements of the Summit, along with new plans to ensure that sickle cell patients and caregivers are presented with a well-rounded experience that maintains the aspects of the Warriors Convention that make it unique. Unfortunately, Covid-19 has brought the world to a standstill. This, however, has not stopped us from coordinating with our partners to host exceptional events and to provide abundant resources and opportunities to grow and develop strong warrior families and advocates. The sickle cell community has experienced extreme hardship and endured both mental and physical isolation and exhaustion. We have grown through this adversity, strengthened in our resolve to become stronger leaders, bolder advocates, and patient experts in our disease. Despite all else, we are the rose that grew, we are the unbreakable warrior.

This year, we’re 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 engage with the sickle cell patient and caregiver community. 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.

The Convention Planning Committee has invested great time, thought and research to ensure an engaging and informative experience. Highlights of the upcoming Symposium include:

  • Partner Digital Booths
  • Community Conversations
  • Healthy Living – Caregiver Conversations
  • Children’s Track
  • Young Adult Track
  • Men’s Track ….and so much more

 

We are bringing back activities such as Paint and Chat and Gaming Night, and introducing new ones like Make-up and Advocacy and Healthy Cooking with Warriors. Visit the SPECIAL ACTIVITIES page in the menu for more detailed information.

We are excited to bring back the Children’s Track, Young Adult Track, Sickle Cell Trait Track, and the Men’s Track again this year. Visit the TRACKS page in the main menu for additional details.

ALL warriors and caregivers are automatically offered the scholarship rate of $15 this year. The is NO APPLICATION.

Simply select that already discounted rate as your ticket type You will also need to select the SPECIAL ACTIVITIES you plan to attend, along with your chosen TRACK(s). If additional financial help is needed, patients and caregivers should contact Mrs. Maria Rivera or Mrs. Janeen Greene to request assistance. All other participants requesting additional financial assistance should contact Doris Bailey.

Register-Now-button-red

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!