Upcoming Events
Transition and Shared Decision Making
for Patients with Sickle Cell Disease
Program to help patients become full partners in their treatment as they transition from pediatric to adult care
February 2026
Virtual Program
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Re-Imagining Pain Through Art
and Symphony of Voices
Art Exhibit and Poetry Performance Raising Awareness of the Challenges faced by rare disease patients and celebrating their strength. Featuring works created by patients who use art to help manage chronic pain.
Date TBD
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Programs in Development
Time to Listen to Sickle Cell and Connective Tissue Disease
Six interactive workshops for medical students, nursing students, residents, nurses and clinicians that reveal the 360-degree experience of patients with SCD or Connective Tissue Disorders. Participants will be able to develop effective and respectful strategies for treating and interacting with these patients through recognizing the medical, emotional/psychological, social/behavioral, and financial/professional aspects of living with these diseases. ​
January through April 2026
Online
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On Trials: Participating in Clinical Trials for Patients with SCD
A workshop addressing the importance of participating in clinical trials, what participation entails and how to find a trial.
February 2026
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Recipe for Success:
Nutritional Support for Patients with SCD
Hybrid program helping patients and caregivers support a healthy lifestyle with SCD through appropriate nutrition.
May 2026
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Transition Part I: Evolving Role of a Caregiver
Virtual learning event offering best practices to support transitioning SCD patient as they take charge of their health.
July 2026
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Transition Part II: Real Men Standing Up to SCD
Virtual learning event offering best practices for transitioning male patients with SCD to take charge of their health and effectively interact with their care team.
August 2026
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