What is a Sickle Cell Care Team? And How to Create One that Works for You.
Presenter
James Taylor
Sickle Cell Disease sessions
Free, live conversations for people living with sickle cell disease, their families and the people caring for them.
13 upcoming137 past
Next session
Less Stress, Better Care: Prepare for Tests, Procedures and Results
· 6:00 PM – 7:00 PM ET · Colin Kloock, MD
Past sessions
August 2025
6:00 PM – 6:50 PM ET In this session we discuss what a "Patient Care Team" is and importance of creating one for you or your child's care. In addition, we will share concrete steps you can take to build a PTC on your own. 6:00 PM – 6:50 PM ET “Nobody Gets Me”: Navigating Family and Friendships with SCD
Presenter
Patrise Holden
Managing relationships can be hard when you live with an invisible illness. We’ll talk about how to handle people who don’t understand your pain, how to educate loved ones, and how to protect your peace.
July 2025
6:00 PM – 7:00 PM ET Overcoming Loss, Grief, and Missed Life Experiences Due to Chronic Illness
Presenter
Patrise Holden
Chronic illness can bring deep grief—not just for what’s lost, but for what might have been. This session explores how to process loss, honor your emotions, and find healing after missed milestones, relationships, or dreams impacted by long-term illness.
June 2025
6:00 PM – 7:00 PM ET Caregivers: Call of Duty or Unsung Heroes?
Presenter
Patrise Holden
In this week’s session, Caregivers: Call of Duty or Unsung Heroes?, we’ll explore the complex role of caregiving in rare disease. Whether you're a family member, friend, or professional, caregiving can be both a heavy responsibility and an act of profound love. Let’s talk about the challenges, emotions, and impact of being there for someone who needs you. 6:00 PM – 7:00 PM ET Sharing Your Story on World Sickle Cell Day
Presenter
Patrise Holden
This World Sickle Cell Day, join us for a powerful session where your voice matters. Learn how to share your journey and connect with others. Participants will have the opportunity to speak, be heard, and inspire change through their personal stories. 6:00 PM – 7:00 PM ET Do Those With Chronic Illness Suffer Higher Anxiety?
Presenter
Patrise Holden
Join us for our next session, Do Those With Chronic Illness Suffer Higher Anxiety? We’ll explore the connection between chronic illness and anxiety, why it happens, and what can be done about it. Learn strategies to manage emotional health while living with a long-term condition and hear insights from experts and others facing similar challenges. 6:00 PM – 7:00 PM ET Coping with Sadness and Illness: Simple Tools That Help
Presenter
Patrise Holden
Join us for "Coping with Sadness and Illness: Simple Tools That Help", a supportive session exploring the emotional toll chronic illness can take. We'll share practical, compassionate strategies to manage low moods, reduce emotional overwhelm, and build daily habits that gently support mental well-being—no matter where you are on your health journey.
May 2025
6:00 PM – 7:00 PM ET How To Give Back to Those Who Care About You
Presenter
Patrise Holden
Our upcoming session, Are You Giving as Much as Your Chronic Illness Demands of Others?, invites thoughtful reflection on the emotional, physical, and logistical toll your illness takes on loved ones. We’ll explore how self-awareness, communication, and reciprocity can strengthen relationships and improve care dynamics. 6:00 PM – 7:00 PM ET Show and Tell: Healing Through What We Hold Dear
Presenter
Patrise Holden
In Show and Tell: Healing Through What We Hold Dear, participants are invited to share 3 meaningful objects that represents strength, hope, or healing in their journey. This powerful session explores how personal items can carry deep emotional significance and foster connection, reflection, and resilience within our rare disease community. 6:00 PM – 6:45 PM ET Minorities and Clinical Trials: Why We Are Trailing Behind
Presenter
Patrise Holden
Minorities are significantly underrepresented in clinical trials, leading to a lack of understanding about how certain treatments may affect different racial and ethnic groups. This is a major problem as it can result in ineffective or even harmful treatments for minority populations. There are several reasons why minorities are trailing behind in clinical trials, including lack of access to healthcare, mistrust of the medical system, language barriers, and financial barriers. These factors contribute to the overall lack of diversity in clinical trial participants, which ultimately hinders the development of personalized and effective treatments for all individuals. In order to address this issue, it is crucial for researchers to actively recruit and retain minority participants in clinical trials. This can be done through community outreach programs, culturally sensitive messaging, and providing resources to overcome the barriers that often prevent minority individuals from participating in clinical research. By increasing diversity in clinical trials, medical researchers can gain a better understanding of how different populations respond to treatments, ultimately leading to more effective and safe healthcare practices for all individuals.
April 2025
6:00 PM – 6:45 PM ET Living with Purpose, the Most Powerful Medicine Modern Science Can't Offer
Presenter
Patrise Holden
Living with purpose is a powerful medicine that modern science cannot replicate. Purpose gives our lives meaning and direction, helping us stay focused and motivated even in the face of adversity. When we have a clear sense of purpose, we are more resilient and better able to cope with stress and challenges. Studies have shown that people who live with purpose have lower rates of depression, anxiety, and chronic illnesses. They are also more likely to engage in healthy behaviors, such as regular exercise and proper nutrition. In fact, having a strong sense of purpose has been linked to longer life expectancy and better overall health. Living with purpose can also improve our mental health and well-being. When we have a reason to get out of bed in the morning, we are more likely to feel fulfilled and happy. Purpose can help us find meaning in difficult situations and provide us with a sense of control and agency in our lives. Ultimately, living with purpose is about connecting with something greater than ourselves and contributing to the greater good. Whether it 6:00 PM – 6:45 PM ET Your Role in Advocating for Healthcare Success
Presenter
Patrise Holden
As a healthcare advocate, I play a crucial role in promoting the success of healthcare by advocating for policies and practices that prioritize patient well-being, access to care, and quality of services. This can include: 1. Lobbying for policies that expand access to healthcare for all individuals, regardless of their socioeconomic status or background. 2. Educating healthcare providers and the public about best practices in patient care and treatment options. 3. Working to eliminate disparities in healthcare outcomes based on race, ethnicity, gender, sexual orientation, or other factors. 4. Collaborating with healthcare organizations and government agencies to improve the quality and safety of healthcare services. 5. Advocating for increased funding and resources for healthcare research, prevention, and treatment programs. 6. Supporting initiatives that promote mental health awareness and destigmatize mental health conditions. 7. Engaging with lawmakers and policymakers to ensure that healthcare legislation reflects the needs and concerns of patients and providers.