Survey: Draft Fact Sheets on SCD Therapies

The Sickle Cell Disease Coalition (SCDC), is developing fact sheets on sickle cell disease (SCD) therapies for the community and would appreciate your help reviewing the draft resources.  As background, the SCDC formed to amplify the voice of the SCD stakeholder community to improve outcomes for individuals with SCD and Sickle Cell Warriors, Inc. is a member of the Coalition.

The SCDC is developing fact sheets for L-glutamine (Endari), crizanlizumab (Advakeo) and voxelotor (Oxbryta).  The sheets developed to educate individuals living with SCD, caregivers and other stakeholders about these therapies, and encourage self-advocacy regarding disease management, and facilitate discussion between individuals affected by the disease and their health care providers.

The SCDC needs our help to get your opinion on these sheets.   Your input is important. We want sheets to resonate with individuals who are affected by SCD.  Please take the following steps to provide your feedback on what you think about the design and content.

  • Review the draft fact sheets here.
  • Once you review the draft sheets, please complete this anonymous survey.
  • The fact sheets are a private draft, please do not share them with anyone.

In sum, please complete the survey by Tuesday, March 9, 2021.  Thank you, and please do not hesitate to reach out to SCW if you have any questions.

Brooke Pillifant

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